http://pemphie.wordpress.com living naturally with pemphigus Sun, 20 Jul 2008 21:32:02 +0000 http://backend.userland.com/rss092 en You'd think that no news would be good news, but alas no.  The infusions I had back in April failed.  I was blister-free for a couple of months, but that was not necessarily due to the infusions, could have just been the daily, oral prednisolone. Anyway, two weeks ago I had ... http://pemphie.wordpress.com/2008/07/20/99/ An update ... I think I have an infection where my cannula was.  My arm hurts, is swollen and it's a bit 'gunky'.  I feel fairly awful.  My temperature was 38.1 this morning, and I felt sick and faint.  I also have a splitting headache which just won't shift.  My breathing ... http://pemphie.wordpress.com/2008/04/13/98/ I have escaped from hospital (a day early) - woo! The prednisolone infusions seem to have gone well and without any horrible side-effects or reactions.  I had three lots of 1000mg over three days put in through a cannula.  Despite massive amounts of steroids running through my body I slept like ... http://pemphie.wordpress.com/2008/04/10/97/ Saw this at the library last week and thought it was hilarious, so I had to share.  The romance novels are always good for a bit of a laugh. http://pemphie.wordpress.com/2008/04/07/95/ I want to learn sign language, well some basic sign language.  So far I've learned to fingerspell the alphabet (not much, I know!), but I've been looking for a course.  I got in contact with the Aberdeen & North East Deaf Society about courses and after a bit of a ... http://pemphie.wordpress.com/2008/04/04/101-things/ I eventually got a new dermatologist at Aberdeen Royal Infirmary's dermatology unit.  I saw him a while back and he put my prednisolone up to 40mg.  He also suggested that I might benefit from high dose prednisolone infusions.  So, he consulted the head of dermatology in Aberdeen and he agreed.  ... http://pemphie.wordpress.com/2008/04/03/93/ My monthly appointment with the nurse for blood tests turned into something of an epic visit - I was in for about an hour.  I can bitch about the NHS all I like, but I must admit that my local surgery does seem to still be interested in patient welfare ... http://pemphie.wordpress.com/2008/02/04/92/ Random stuff from the weekend: My friend J got engaged to her loooooong-time boyfriend.  I'm so happy for them. Managed to figure out some Times crossword clues with no - or at least very little - cheating. Pemphie-related pain is bad.  My skin just seems to be falling off at the moment - ... http://pemphie.wordpress.com/2008/02/04/91/ I was due to work this afternoon, but the weather was so bad I gave myself a snow day.  It would have been dangerous to try and get to work, so instead I am enjoying an afternoon by the fire, in front of the tv. Yesterday, I finally got paid - ... http://pemphie.wordpress.com/2008/02/01/90/ I've been having a bit of a rough time with the pemphie.  It has flared up again and again.  No sooner does it start to disappear and I being to heal, it comes back, and always a little bit worse than the time before. I was last at the hospital at ... http://pemphie.wordpress.com/2008/01/28/89/