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Time Out

August 28, 2012

ImageAfter weeks of anxiety about it, I did it, I went to France and had a little holiday.  I have posted this blurry picture of the Bayeux Tapestry because (unintentionally when I took it) it actually represents rather well what the world looks like out of my left eye at the moment.

It’s been a while since I posted and there have been a few developments, but ultimately I’m still a bit in limbo with ongoing tests. The opthalmology consultant felt that the steroids were helping to reduce the inflammation in both eyes and is tapering down the dose, but next week I am starting on the immunosuppressant mycophenolate mofetil, the aim is to get me on this longer term and off the steroids – ANYTHING to get off the steroids please.

In terms of prednisone side effects, I don’t feel like I’ve put on a lot of weight (although a rather liberal attitude towards wine and cheese in France has meant I’ve avoided the scales since I got home), I don’t ‘think’ I have a moon face, I’ve noticed my skin is a bit papery on the back of my hands.  The main issue is still the sleep (I’m averaging 4 hours a night) and the anxiety.

Before I went away I also saw the Renal consultant who put me on blood pressure medication (just another pill to add to the mix), I’m having a blood test this morning to check my kidney function and an ultrasound on Monday before going back to see them again next week.  From the sounds of the letter I received whilst I was away it looks like they suspect my kidneys may be being affected by this autoimmune disorder too.  This pisses me off.

Tomorrow I have the dreaded brain MRI scan, I am going to take my Rumor cd to try and chill out. I’m not sure if I’m more scared of the claustraphobia or the fact they may discover a horrible tumour – probably both. Please don’t let this horrible condition be affecting my brain; this could be possibly more than I could bear right now.

Normandy was lovely by the way – sunshine, pretty towns, good food and, yes, Mont St Michel is hideously crowded in August but beautiful to look at.


From → Uveitis

One Comment
  1. I’m glad you got away for a while! Try not to stres about the MRI. They did one of my brain and spine as a last ditch attempt to “find anything.” Uveitis is less often associated with brain complications from what I understand. Hang in there and try to enjoy a little nap while in the tube. I focused on the rhythms of the machine, which can seem almost musical at times. Hang in there, ou are stronger than you realize.

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