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Back to school.

September 5, 2012

My husband is a teacher and my daughter is 5 so school plays a pretty big part in our lives.  The summer holidays have been a bit weird this year with me not being too well and umpteen hospital appointments and I greet the new school year with mixed emotions.  I am a lover of routine so I’m pleased that we can all get back into one, but I’m also anxious about time on my own without my family around.

My anxiety is being a bugger this week, I wish it would just leave me alone, I’ve got enough to deal with without this unhelpful condition.  I started the mycophenolate yesterday and, so far, so good no side effects but the long term implications of being on such medication (the cancer risk specifically) is scaring the hell out of me and I’m having all these thoughts that I’d be better off risking my eyes than increasing my risk of lymphoma.  I also reduce the prednisone down to 15mg yesterday and I do find when I taper down that it leaves me feeling a bit on edge for a couple of days.

Also, annoyingly over the past 2 days I’ve had a savage appetite – having been on high doses of steroids for about a month without any appetite change, why is it now I’m on a low dose that I’m RAVENOUS.  I’m eating so much fruit, nuts, dried mango and salad (and couldn’t resist a yorkie bar) and all I want is crisps and burgers. Also wine, I want a glass of wine… doc says not for now, but please tell me the odd glass of red when you’re on mycophenolate is an option at least after a while….

On a positive note I had an ultrasound of my kidneys and follow up appointment today and they all look ok.  The Renal doctor was very helpful actually in explaining my situation to me a bit more, he said I have a systemic vasculitis that is currently only presenting in my eyes (uveitis), it may have also been in my kidneys but, if so, the steroids have stopped it for now.  He said they will monitor me regularly to check it doesn’t spread, but hopefully because it’s been caught early the drugs should control it.  So, that is good news in the scheme of things.  The Renal services waiting room experience was a leveller – lot of very poorly people in there and really I should be grateful that I’m not that sick.

Ah well, I guess sometimes things just get on top of me a bit and it’s hard to cling to the positives, but hey aren’t I allowed to be a bit down in the dumps just a little bit?


From → Uveitis

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