i suppose the best way to describe how I feel is lost. Like the rest of you I do not like what this is doing to my life and all the changes I have to make. I hate being so tired all the time.
I don't have a firm diagnosis of Lupus but have been told I have APS. I am a bit of a control freak and I just want an answer so I can get on with it not sit here wondering what is wrong so I can try to understand it. I want to know if I should go to a GP if this or that happens, as I normally wait to see if it will go away. Mind you having said that I have also lost faith in my GP over this last year, I don't feel he listens or even understands. When my speech became more muddled earlier this year his partner put me on 150mg Aspirin straight away as she suspected I had APS but he just said he was sure it wasn't and halved the dosage when I next saw him but I have now had a positive result for APS and been referred to haematology on my rheumatologists recommendation. He recently suggested coming off one of my meds (arcoxia) because of the reflux which is getting worse but I would hate to think how much worse this would make getting out of bed in the morning. He marks my blood results to be repeated in 2 months and I have them every 2 weeks! My egfr is now at 49 and when I asked if this is ok he said yes which is his stock answer I think. My fbc is just above 10 and yes that is ok as well, does he not realise how tired I am. I would not wish how i feel on anyone but maybe if he felt like this he would understand more.
I just want to cry!
Sorry rant over.