November 23, 2008

It’s almost Christmas!  Yes, I am one of those people who starts getting ready for Christmas super early.  I just love it.  It’s the best time of the year … and not only because I get to shop without feeling (too) guilty.  I’m trying to ‘buy handmade’ this year, at least more so than I have done in the past.  I’m making the most of Etsy and its loveliness.

I’ve got a new job.  I’ve not started it yet; I have to wait for my Disclosure to come through.

In the build up to my interview for the job I didn’t think I was stressed, but I must have been – my pemphie flared up the day after the interview and now I can’t get it under control.  On top of the pain and discomfort of the pemphie, I have a persistent dry cough.  I’ve had the cough for about two months and I just can’t shake it.  I’ve been to see my GP who could find nothing wrong, but said it might possibly be a form of whooping cough (I don’t have the characteristic ‘whoop’ so I doubt it).  He’s given me antibiotics, but they’re doing nothing.  I’m feeling a bit crap.  My health sucks at the moment.

I didn’t go to work today, because of the snow.  I got up at my usual time of 6.30am and between then and 11am the road wasn’t ploughed once.  I felt guilty phoning in to say I couldn’t make it in, but I felt relieved too.  Work tires me, and Saturdays are especially bad.  I do miss the pred-related highs.

September 9, 2008

I’ve been on Dapsone (along with Pred) for several weeks now, and it really isn’t working for me.  Plus I’m feeling even more tired and ‘blah’ than normal.  I’ve also had a bit of a funny tummy, blue lips and a racing heart on the Dapsone.  Not nice.

My next hospital appointment is October 16th and I’m thinking about asking if I can stop taking the Dapsone and just try reducing the Pred.  If I’m getting blisters anyway, then I might be better getting blisters and be on as few drugs as possible.  At least there would be somewhere to go with the meds then.

I feel so tired all the time right now.  I’m quite glad that I’m not working full time at the moment.  I was barely coping over the Summer – not that I would have said anything to my bosses – you just have to knuckle down and do it … then collapse when you get home.

I’m having no luck with job hunting (which is maybe just as well).

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 (25/06/08) 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.

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!)

21 July 2007 July 21, 2007

The job is going well. I’m not making too many mistakes, and I’m gradually learning and remembering things. Every day something new crops up that I don’t know how to handle, but everyone is nice and patient with me. I have officially finished my two weeks of training now, and next week I am opening up one of the branches.  I think the situation is that I’m based at one branch, but will be sent to others as I am needed.

I got to choose the new dvds for the branch I’m based at.  It was good fun spending the Council’s money on films.  I think it must have been the selection for the month, but I’m not certain.

I’m exhausted all of the time, and my feet hurt a lot. Of course with the new job came new germs and my immune system is so compromised that I now have a cold which is making everything that little bit harder.

I’m eating quite well: lots of organic stuff, homemade bread (the breadmaker from Amazon still hasn’t arrived though), fruit and so on. I must be getting a fair amount of exercise. I’m on my feet all day from when I arrive at about 8.30am until I leave at 5pm (on an early shift), with just an hour at lunch to take the weight off. I’ve been lucky that so far I’ve had lifts in and out most days, but I’ve had to take the bus a few times which means a 20 minute walk each way.

There are perks to working in a library. I’m not entirely sure I’m supposed to, but I waived the fees on some dvds I rented for this weekend, thus saving myself a few quid. I’ve got Babel, Good Night and Good Luck a CSI: NY boxset – should keep me entertained for a wee while. The other perk of the job is free books. I get my pick of the withdrawn stock. Most of the books don’t appeal, but I did pick up Raw Spirit by Iain Banks. It’s his non-fiction, whisky trail book, and I’ve heard it’s good.

I’m learning what I like about library work, and it’s giving me a good insight into the sorts of things I want out of a library job.  I’ve learned that I quite like customer service, this surprises me as I’ve never been a very social person, and I’m quite shy.  On the other hand, I’ve learned that I really don’t know how to talk to children and that I know nothing about children’s books.  I don’t think I could be a school librarian for example.  I know now that I love information enquiries.  Things where I have to actually use my searching skills.  I don’t get to do much of this at the moment though.  The work is mostly issuing and discharging books/CDs/dvds, signing up new members, renewing leisure cards and straightening stock.

—

I watched Capote during the week.  I have very little to say about it.  It was good, but didn’t do much for me – maybe I was just too tired to appreciate it.  I think Philip Seymour Hoffman is a great actor, and he’s clearly a pretty good impersonator of Truman Capote – yes, he really did speak like that – just take a look at (or a ‘listen to’) him in Murder by Death!

—

New companion set arrived and is very comfy, but I’ve not had much chance to use it because of the dreadful weather. We also got our new suite. It looks odd in the living room, but I suppose that’s just because I’m not accustomed to it yet. I’m not convinced that it’s as comfortable as our old suite, but that’s probably just because it hasn’t been broken in yet.

—

Dolly is being allowed out now she is all vaccinated. She has gone from being a sweet little thing to a torturer of voles. Every morning she brings one in and plays with it until it dies or I take it away from her. It’s not an attractive trait.

—

Last week on my day off, Mum and I went to the Finzean Farm Shop. It is a great little place. We had a lovely lunch made from local produce and the tastiest organic bread, then filled a basket with even more food, including some Craigmyle cheese. They had all the different varieties, but I opted for the Morven. It was pretty expensive for a bit of cheese, but it’s tasty. We also drove past the Craigmyle Creamery, and it turns out Mum and Dad almost bought the house opposite and (we think) the land it is on.

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.

2 July 2007 July 2, 2007

Over the past few days, everywhere I turn I am faced with examples of really dreadful customer service. From rude shop staff, to customer service staff who refuse to pick up the phone or answer an email. It’s so tiring.

On Friday, I chased up Dobbies and the missing bench. I ordered a companion set for the garden a month ago, with an estimated delivery time of 48 hours … then heard nothing. The website changed to show that the set had an estimated delivery time of 7 days, but still nothing. After a week, Dad sent an email to them asking where the bench was, but had no reply. So, after a month of no contact from Dobbies I used their live online chat facility to find out where the heck the bench was. One chat and one phone call later: it should be with us a week on Wednesday. I have to say, I would be even more annoyed had the weather been nice and had I consequently been missing out on sitting in the sun on my new companion set. So, the heavy rainfall that we’ve had has at least saved me from that.

All of which reminds me, torrential rain and tubs of plants do not mix well. Practically every day I have had to look at our poor pots and see the plants swimming in water. I’ve been pouring the water out of some of the smaller ones, but really the weather is ruining them.

—

Ugh, I ordered The Poems of Thomas Hardy (the Claire Tomalin book) for Mum’s birthday because she’d read – and I think enjoyed – Tomalin’s biography of Hardy. Then at the weekend I discovered a copy of The Collected Poems of Thomas Hardy by her bed. I can’t cancel my order because it’s already been posted. Is it superfluous to have two collections of Hardy poems?

—

I have signed and posted the contract for my new job.

I’m slightly worried about my (physical) ability to do the job. I spent part of Saturday cleaning my bedroom and moving a few pieces of furniture around. Then on yesterday I slept until 3pm and was still tired for the rest of the day. This does not bode well for 12 weeks of 9 to 5 days spent on my feet.

—

I have pemphie blisters. I am not happy about this. I got some in the usual places on my right forearm and knee. I also have a few ‘erosions’ on my back, neck, torso and left shin (this too seems to be a favourite place for the pemphie to manifest). Needless to say I haven’t reduced my prednisolone (yet).

—

I feel like I’ve had a productive day today. I have actually done stuff. A lot of it is small stuff, that most people would just do automatically and not think of as a big deal, but for me it’s a bigger deal, just because of the energy and … drive, I guess, that I have to have to do anything these days. It’s a horrible thing to admit, but the combination of prednisolone, Cellcept and pemphigus has left me pretty low and with no energy, so even getting out of bed each day is something of an achievement!

Anyway, today I have attempted to vacuum the upstairs landing and my bedroom – I say ‘attempted’ because despite my best efforts the dog hair on my floor is just not shifting. Le Dog is moulting and there is black fluff everywhere. It is quite disgusting. Dolly isn’t normally bothered by the hoovering, but she got quite distressed today and started panting. I hate when cats pant purely because it suggests there’s something wrong with them.

Ooh, I have also made bread! It looks and smells lovely.

Last week I persuaded Mum that she wanted a breadmaker (yes, I know it’s another kitchen gadget, and I know that breadmaking can be done by hand), so we ordered a cheap Morphy Richards breakmaker. It hasn’t arrived yet, but to get me in the mood for fresh baked bread on demand I made a crusty wholemeal loaf. Ach, I won’t pretend I made it from scratch, I used a packet, but it still counts as making bread doesn’t it?

—

Over the weekend I watched two films: Hot Fuzz and The Illusionist. I’m sorry to say I wasn’t terribly impressed with either. Both were okay, perfectly alright, watchable films, but both were a let down. I’d been led to believe that Hot Fuzz was even better than Shaun of the Dead and that The Illusionist was almost as good as The Prestige. Wrong!

Hot Fuzz was nothing like as good as Shaun of the Dead. There just weren’t as many laughs and the story wasn’t as tight and, quite frankly, there were some boring bits. At least with Shaun of the Dead the genre (zombie horror) is well defined in people’s minds, and so it was easy to play off that, but with Hot Fuzz I’m not entirely sure what the genre was. It was more like a couple of specific films were being referenced – I’m thinking Straw Dogs (which even referred to in the film) and maybe The Wicker Man. It’s not really enough of a genre though. I think maybe it came closer to a (slightly) comedic version of an episode of Midsomer Murders. It just fell a bit flat for me. Especially after the joy of Shaun of the Dead – I almost wet myself laughing every time I see them beat the old man zombie up while Don’t Stop Me Now is playing.

The Illusionist too had something to live up to, namely obvious comparison to The Prestige. A story of star-crossed lovers and magic, it should have been right up my street, but practically from the moment it started I was disappointed. Where magic of The Prestige was (mostly) real, believable magic, The Illusionist relied on CGI, which just reminded me that I was watching a film and that nothing was real. I love Edward Norton, I think he is a fantastic actor, but I really couldn’t see the appeal of him in this film. His character really didn’t have much charisma. The film lacked substance, there wasn’t a huge amount going on, and there wasn’t much energy and excitement. The ending was okay, and I do like a twist, but enough wasn’t made of it. I really was disappointed, but like I say it was perfectly watchable. I think it would be a wise idea to watch The Illusionist before seeing The Prestige though.