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 a major flare up after I got a nasty stomach bug and my prednisolone had to go from 7mg to 40mg every day.

This morning I had a outpatient appointment at the dermatology clinic.  Another appointment, another doctor.  No explanation of what has become of my previous consultant.  My new consultant has taken me off the Cellcept (mycophenolate mofetil) and as soon as I can get my prescription filled, I will be starting on Dapsone.

I’ve had a bit of a read up on Dapsone, and I’m not all that impressed.  There doesn’t seem to be much evidence to support its use in cases of Pemphigus Foliaceous.

I also finally asked about whether I should be having bone density scans (because of the level and length of time I’ve been on the prednisolone), and apparently, apart from being a woman I have none of the risk factors … hmm, and here was me thinking that prednisolone itself was a risk factor!  So, I’m not getting bone scans.  I’m actually tempted to look into getting one done privately, just to put my mind at ease.

Other than the pemphie, I’ve started my summer job at the library.  Full time hours are taking their toll on me and I’m feeling very tired all the time.

I bought and read a book called Women, Work, and Autoimmune Disease: Keep Working, Girlfriend! by Rosalind Joffe and Joan Friedlander.  It’s not great.  I wanted practical advice that was relevant to me.  There are lots of little case studies which I couldn’t relate to.  I don’t have the option of flexible working hours, or asking someone else to do my work, or self-employment.  It was quite a superficial book that didn’t really tell me anything new or relevant.  It was a good idea, and may be relevant to many women with autoimmune diseases.  Also, I hated the ‘girlfriend’ bits - how horribly American and crass.

On the subject of books: I’ve been ‘doing’ the Richard and Judy Summer Read.  I’ve decided to stop being a snob and to actually read stuff that people ask about in the library.  So far the books have been okay.

I liked The Outcast by Sadie Jones (25/06/0 book, it reminded me of Atonement-lite, and as such I found it much more accessible and enjoyable (I just couldn’t get into Atonement, though I thoroughly enjoyed the film).  The self-injury in the book seem such a modern aspect to the story, but it nevertheless didn’t jar with the rest of the story.

I was much less keen on No Time For Goodbye by Linwood Barclay (02/07/08).  It was like a million other thrillers.  Nothing to make it standout.  The twist - oh, yes a twist - wasn’t even that cleverly done.  Perfectly readable, I suspect it will be one of the more popular ones from this summer’s book club, because it’s so straightforward (ugh, I really am a snob).

I’m currently reading East Of The Sun by Julia Gregson.  It’s absolutely not my normal sort of book - it’s the sort of book that I would associate with older women who like a Maeve Binchy / family-saga type of book.  It’s alright though.  It’s well written (actually, I believe the author is a former model which makes it all the more impressive - they are supposed to be stoopid, clotheshorses, not talented authors!), the detail is impressive and the characters likeable.  There’s a tiny bit of darkness under the surface with the bubbling unrest of ‘colonial’ India as the backdrop.

The second thriller on the list is this past week’s book, Down River by John Hart (16/07/08).  Much better than No Time For Goodbye.  All the blurbs and comments seem to say ‘Chandleresque’ and I’d have to echo that.  It’s noir-ish and different.  Again it has twists, but this time they are clever and keep the reader guessing.  I did guess the ending, at least in part, but I think what that shows is that it wasn’t plucked from nowhere - it made sense and with hindsight, looking back at the clues through the book the ending was believable.  It was the third of the first four books to feature self-injury (East of the Sun being the second) … an interesting theme for a tea-time, mainstream, warm and fuzzy, telly reading club!

Four more books to go.

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 is a bit weird too.  I feel like I can’t catch my breath.  I’m getting out of breath doing nothing.

I’m working a late shift tomorrow so will have to try and get to see my GP in the morning.

I hate being ill and having a non-existent immune system!

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 a baby last night.  My blood sugar got up to 10.1, but the doctor was pretty impressed that it hadn’t gotten a lot higher considering everything.  My blood pressure has been perfect to slightly low (could be down to my expert use of my Dr Andrew Weil guided imagery audiobook!) .  My blood tests were all fine.

My daily dose of pred is being reduced by 5mg per week until I’m off the stuff, so tomorrow I’m down to 35mg.

I should be getting an appointment through to see my consultant in a few weeks (he didn’t make it in to see me while I was on the ward - hmm, no comment!).

While I was in hospital Mum got phone calls for me from work.  I am a preferred candidate for the summer job … so basically, as long as my references are okay and my Disclosure Scotland thing comes through okay, I have the job - hurrah.

I’m also working more hours next week, so I hope I don’t suddenly feel awful because of the treatment!

In more fun news, I’m off to see ‘And then there were none’ at the theatre on Saturday.  I have a small ‘And then there were none’ obsession, so I’m rather excited about this.

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.

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 delay they got back to me with a course that costs 320 pounds, which is waaaay more than I can afford.  I don’t want a qualification or a certificate, I just want to learn.  I think I’m going to have to rely on books and dvds.

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.  The treatment basically consists of going into hospital and receiving very high doses of prednisolone over a period of three days.

Yesterday evening I got a phone call from the hospital saying that they had been expecting me to go in that day - first I’d heard!  Anyway, we have arranged that I will go in on Tuesday.  This is good for me because I’ve got no work for next week.

Also, I made a list of some of the links I use for my toiletries shopping:  Natural toiletries and cosmetics.

Yesterday, I had my interview for the summer job at the libraries.  As usual I said lots of inappropriate things - what is wrong with me?!?  I open my mouth and rubbish just spews out.  I’m still hopeful about getting the job though.

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.

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.

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.

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 the end of August and was supposed to return after two months.  I was eventually given an appointment at the end of November but couldn’t attend because I was away.  I let the hospital know in plenty time that I wouldn’t be able to make the November appointment.  And since then I’ve heard nothing.  I have made several phone calls to the Dermatology department and have repeatedly been fobbed off and told that I’ll be sent an appointment in due course.  I’ve even asked if it would be possible just to speak to a consultant and was told no.  As I understood it, the delay was because I was allocated a locum consultant who only visited when there were sufficient numbers of appointments ‘collected’.

Today,  I saw my GP.  He was fantastic and immediately phoned Dermatology to find out what the hell was going on.  I could only hear one end of the conversation, but they clearly began by trying to fob him off too, but he persisted and pointed out that I didn’t have a ‘minor skin condition’, and that my illness is a serious, chronic one.  Eventually, he got to the truth of the matter: the locum has left and all patients allocated to him have been abandoned!  No one thought to tell me or my GP (or presumably any of the locum’s other patients).  My GP was clearly angry.  So, now he has to re-refer me.  the whole situation is ridiculous and deeply worrying.  What on earth does NHS Grampian think it is doing?!?  I think I might write a letter to my MSP (Mike Rumbles), because although I’m being re-referred it’s only because my GP and I were both persistent, others might easily fall through the cracks and be forgotten about.