July 20, 2008

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.

April 10, 2008

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.

April 3, 2008

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.

February 4, 2008

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

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.

January 28, 2008

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.

02 October 2007 October 2, 2007

Pemphie flare over the weekend.  I was a bit under the weather at work on Friday, then on Saturday morning I fainted and by Sunday I had blisters.  I guess it was a combination of being ill with a random bug, going down to Glasgow on the Thursday for Laura’s memorial service, trying to reduce my pred (I was just going down to 10/12.5mg) and finishing up my summer job.  I’ve upped my pred to 20mg to squash the flare.

The fainting spell and generally feeling ill was worrying.  I thought I was dying.

Today was officially my last day of my summer job.  Woo hoo!  I’ve really enjoyed it, but I’m just so tired and am absolutely in need of a rest.  I’m down as casual staff and have already been asked to do shifts.  I need to apply for a permanent job soon, but I might concentrate on finding on a part-time position which won’t tire me quite so much.

04 August 2007 August 4, 2007

Work is leaving me exhausted. At the end of each day I am so tired I can’t do anything, but collapse on the sofa or straight into bed. It hasn’t helped that I have started to reduce my pred. I’m making lots of mistakes at work, but I met the woman who started after me and she is making mistakes too, so I don’t feel quite so bad. I’m going to apply for a permanent, part time job at the library I’ve been working at the most. I’ve no idea if I’ve got any chance of getting the job. I figure that at least I wouldn’t need training and that I’m familiar with the library whereas most of the other applicants probably wouldn’t be. On the other hand, my boss knows about all my mistakes. She seems to like me, but maybe she’s just being nice.

This is the end of my first week reducing to 15/12.5 EOD of the pred. Today I woke to find a small cluster of blisters under my right breast. I will persist with the reduction unless things get much worse.

I’m getting quite a bit of exercise since I started work. I’m on my feet all day and I walk to and from the bus stop most days (about 1.5 miles). I have less opportunity to snack during the day, so I think I’m eating less than I was. Hopefully all this means that I’m losing weight … although I’ve yet to notice anything which would suggest this.

(Library mules!)

10 July 2007 July 10, 2007

Today was my first day at my new job and I am exhausted.  I’ve no idea how I’m going to cope with this for three months (never mind the prospect of working full time permanently).  I didn’t sleep well last night, because I was nervous and Boo was on my bed for most of the night which always disrupts my sleep.  I got a tour of the Central library in the morning, then spent the rest of my time shelving and on the issue/returns desk.  It was stressful and scary, and of course I felt like a total idiot for most of the day.  Hopefully it will get better.

I have quite a lot of new pemphie blisters.

6 July 2007 July 6, 2007

The day before yesterday was Mum and Dad’s wedding anniversary. Dad buggered off to Paris leaving Mum to be maudlin. Mum seemed to like the nest I gave her and Dad and welled up at the alternative gift. I didn’t see Dad before he left, but I spoke to him on the phone. Mum also had her retirement ‘do’ last night. She was dreading it, but I think she enjoyed it once she was their. She had been thinking that she wouldn’t get much despite having worked at the school for over 13 years. She was wrong. They gave her lots of little goodies and a cheque for a substantial amount for her to pass on to the DEC for the Darfur and Chad Crisis appeal (she’d told them that she didn’t want ’stuff’ but would rather donate to charity).

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Because of the coincidence of retirement and anniversary the house is full to the rafters with cut flowers. I do love having flowers in the house, but I know that environmentally they’re generally a big no-no, mainly because of the CO2 emissions involved in getting the flowers from the producer to consumer fast. Ethically they’re generally not so good either unless you buy Fair Trade. The best advice seems to be either opt for a pot plant or buy local, seasonal flowers (easier said than done). There’s an initiative called Fair Flowers Fair Plants that is working to encourage the growth and sales of flowers and plants that are produced in an environmentally sensitive manner. Their website has a search facility so you can look for participating retailers in your area, but really there aren’t that many which is a real shame. No retailers north of Edinburgh that I could see.

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More pemphie blisters. This time on my right shin and right wrist (I wonder what it is about the right side of my body?) They are tiny, but demoralising … and sore. Consequently, I am still stuck at 15mg of pred.  I feel really horrible right now.  The tiredness has now been (re-)joined by nausea and my world ’shimmy-ing’ (it’s a balance problem).  I spent last night holding on to my bed as I fell asleep because it felt like it was tipping and twisting underneath me.

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I got my university results through for this year, not that I’ve actually done anything in the past year. I have officially failed my first attempt at the masters stage of my course because I didn’t submit (and pass obviously) my dissertation for May. My second (and final) attempt is due in October. I knew it was coming, but it’s not nice to get something saying you’ve failed.

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I read Michael Tolliver Lives by Armistead Maupin a couple of days ago. I am such a huge fan of the Tales of the City series of books. I fell in love with all the characters as soon as I started reading the first book many, many years ago. It has been such a long wait for this latest (and last?) book, but it was worth the wait. I meant to re-read the previous books in anticipation of reading this last one, but didn’t get round to it, so I was a little hazy about where I had left the characters. The title probably gives away the fact that Mouse is still alive. The story is told from his point of view, so it’s mostly about him, but Maupin gives the reader updates on what has happened to all the Barbary Lane favourites - Mrs Madrigal, Brian, Mona and, of course, Mary Ann. Even more minor characters from previous books are referred to. I don’t think I’m giving too much away by saying that some of it is heartbreaking stuff and I spent most of the last few chapters in floods of tears.

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Today, I took Mum out for a retirement lunch on her first day of freedom.  We went to Inverurie and while there we went and searched for (and found) The ‘Green’ Grocer.  I’d heard some good reports about the shop from fellow NEEPs.  It’s just a wee shop (opposite Farm Foods), but it is packed with local, organic, environmentally friendly foods, household goods and toiletries.  A little treasure trove.  We bought Crannach bread, local honey and some other stuff.

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I’ve had a little button thing on my blog for a wee while now showing my support for Alan Johnston the BBC journalist who was kidnapped in Gaza. As most people will now know, there is finally some excellent news: he has been freed.