I'm in the midst of my most recent lupus and for the first time since my 2005 diagnosis I am struggling to maintain my positive attitude. Since my 3rd flare in January and subsequent kidney biopsy i;ve been on a cocktail of meds (3grams MMF, 30mg pred, 400mg hydroxy, alendronic acid, lansaprozole) My symptoms are bad enough alone (severe joint pain, headaches, blackouts, nightfever, exhaustion) never mind the side effects of the meds. I'm just exhausted and am trying to manage my demanding HR job and be a mum to a feisty 19 month old boy. I am due to go to my best friends hen party next month abroad for a few days and I had been looking forward to this for a year but I have no motivation to go whatsoever. I feel really negative about everything, my lupus rash has re-appeared all over my face and body and now I have to go for an urgent review with my rheumatologist and nephrologist as they feel the meds are not working as they should after 6 months. The latest debate is to possibly start me on cyclophosphamide which petrifies me. I'm 31 and feel more like 71. I sat in work last Friday and just cried in a room which is ridiculous and totally out of character for me. I try to tell people I desperately need rest and more the point, a full nights interrupted sleep which i've not had in years. I am always met with the same response - you look ok. Its rubbish, I look drained, have this bloated rash covered face and am a shadow of my former self. You could ask "am I wallowing in self pity?" i've thought this and told myself to get a grip but I cant. I take my frustrations out on my partner and rather than enjoying time with my boy, I feel like its a chore which is an awful feeling but I don't know what to do. I'll be discussing all of this when I am at the hospital but my god, this is a tough time. I know this is a long process and my last flare put me in hospital and took 18 months recovery to come off the meds so I have a realistic view on what to expect but I just think that the combination of everything can become to much. Long post, long rant - needed to get it off my chest...
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