me and my pemphie

living naturally with pemphigus

February 4, 2008

Filed under: blood pressure, consultant, meds, nurse, pemphigus — blogarian @ 2:49 pm

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 rather than just statistics.  I can’t imagine that there are many practices out there that would be happy about hour-long appointments.

First we had a chat about the situation with the consultant and the Dermatology department in Aberdeen.  Then a discussion about my various side-effects.  Then can my BP.  My blood pressure was slightly high (133/94) - as it always seems to be when I get it done at the surgery.  Had my blood taken - though as both the nurse and I noted: if I have no consultant, then who gets (and checks) my blood test results?  It’s a mystery.  Then came the stuff that really took up the time.  The nurse asked if my blisters were worse, and they are so I explained about the pain and the ickiness of the open wounds, so she decided to sort me out with dressings (woo!).  It took a fair amount of time to figure out what I needed size-wise, and then we discovered that Tubegauze is not available on the NHS, only on private prescription (which I object to and can’t afford anyway).  The doctor has also prescribed me some heavy-duty painkillers.  A couple of times the nurse asked me about whether I was coping with work.  Hmm.  I’ve appreciated having no work for the past week and not just because of my cough and cold.  The pemphie can be debilitating.

I have been invited to be part of the surgery’s Patient Participation Group.  This is one way for me to be more active and involved in the local community, so I have accepted.  I met the Practice Manager today.  She’s nice and seemed enthusiastic about patients being involved.

 

February 4, 2008

Filed under: Derren Brown, crossword, pemphigus — blogarian @ 12:16 am

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 - blah.
  • Watched Derren Brown’s The System.  Loved it.  The man is a genius.
 

February 1, 2008

Filed under: toiletries and beauty — blogarian @ 2:31 pm

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 - phew.  It was absolutely my own fault for not putting in my weekly time sheets for, erm, 10 weeks.  At last I have some money.  I promptly tried to get rid of some of said money and ordered some new moisturiser.  Yes, I’m still trying to find a moisturiser.  So far, the one I hate the least is Dr Hauschka’s Moisturising Day Cream but I’m sure there must be something better.  Against my better judgement I tried Burt’s Bees Carrot Day Creme - ugh, ugh, ugh.  I love the look and idea of Burt’s Bees stuff, but I found the Carrot Day Creme to be horrible (even worse than the Marshmallow Vanishing Creme).  It sat on top of my skin and made me look orange!  I’ve placed my order for Trilogy Energising Face Lotion.  I like that it’s described as having a ‘light texture’ - sounds good, but I’ll have to wait and see.

A random thought came to me while eating my lunch - when did rubbish collection start, and what happened before?  Talking to The Parentals, when they were young they had very little household rubbish, and the scaffie had a very small truck.  WasteOnline has an information sheet which satisfied my curiosity on the history of rubbish collection.