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.

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!)

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).

—

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.

—

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.

—

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.

—

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.

—

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.

—

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.

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.

28 June 2007 June 28, 2007

Tesco’s delivery without carrier bags has reached us - hurrah! It made taking delivery of the shopping more difficult as the driver only carries the trays to the front door. I ended up filling the porch with food. Total plastic bags used = 1 (for meat). While it meant I had to work a little harder unpacking and putting things away it was quite liberating and uplifting not having a massive pile of plastic bags facing me at the end of it all.

—

This morning I discovered that I cannot do ‘Downward Dog’. I simply do not have the upper body strength. Yes, I have tried out the Just My Size yoga dvd. Megan Garcia is lovely. She’s not a fake plus-size - you know, one of those women who are just so huge that they probably wear, ooh, a size 12 (shock, horror). She actually has a stomach. Yay! Okay, she’s nowhere near as big as me, but she clearly can empathise, and I don’t feel patronised by her and her suggestions for adapting poses. I’d been told, and read about, prednisolone causing muscle wasting, but I hadn’t really noticed it happening to me, but it has. I struggled a little bit with the cat and dog stretches (I don’t know what they are called, but they involve being down on all fours). But when it came to Downward Dogging (oh, that could mean so many things!), I had to just sit and watch passively. Overall, the dvd is good. Garcia is so natural, sweet and calm and really does ’sell’ yoga well. I have a few criticisms though. Firstly, the adaptations are separate from the actual routine. There is in fact an adaptation for Downward Dog which involves placing the hands against a wall, but I didn’t watch Megan’s ‘tips’ until afterwards so this morning I missed out on what will no doubt be an adaptation I have to resort to. Secondly, it feels a little rushed in places. There just isn’t always enough time to follow the instructions. Finally, it’s quite short. I think I’ve heard or read, or maybe Garcia mentions it, that the whole routine is 28 minutes long, which felt a bit short for me.

Btw, XL Emma replied to an entry I made about fat fitness. She is contemplating making an exercise vid. Do it Emma, please!

—

I so organised that I already know what I’m getting my mum for her birthday in August. I caved on the bookplates and ordered some beautiful ones from a seller on Etsy.

I’m a latecomer to Etsy. I’ve browsed it many times in the past, but had never bought anything from there before. It really is a wonderful site allowing artists and crafters to sell their works worldwide.

The BIG problem with Etsy is that there are too many nice things on there. I keep seeing things and thinking “I must have that”.

Anyway, see right for pretty peacock bookplates.

Of course, Mum isn’t just getting bookplates, but it’s part of a book-ish themed pressie. She retires next week from her life as an SFL teacher and is planning on returning to her Open University degree (which has pretty much been all about literature and art history). So, a literary, book-ish theme seems apposite.

—

I have ordered a Bye Bye Standby kit. Things being left on standby is one of my pet peeves around the home. I seem to recall when remote controls actually had proper ‘off’ buttons and not just standby buttons - what happened? I also seem to recall a time when it wasn’t unusual to get up off the sofa to turn the tv off or change the channel. The Bye Bye Standby kit I’ve ordered has three socket adaptor things, so all things televisual can go in one, all things audio can go in another and I’ll have a spare one left over for the living room’s television etc. I had a look around and the cheapest kit I could find was from Amazon (but with a 4-6 week estimate on delivery). Acting on my desire for one of these kits coincided with Mum and Dad getting their electricity bill which is up again. Mum has really embraced my wish to go green and is talking of ‘a green makeover’ for the house. She even said that she’d love her next house to be an eco-home!

 

25 June 2007 June 25, 2007

The cats woke me up at some ungodly hour this morning (Dolly playing with a leaf and Boo wailing to get out) and I struggled to get back to sleep. Consequently, I’ve been even more tired than normal today. This would have been fine but for my trip to the hospital this afternoon.

I had some time to kill in town before heading to my appointment, so I bought a compost crock and then I went into Grampian Health Foods. I’d never been in before, but it’s a fantastic little shop. It’s my idea of shopping heaven at the moment. It has so many of the natural toiletries and organic/natural foods that I’ve been wanting to try - and so much more too. I was a little dubious about the shop after looking at its website and seeing references to Jan de Vries. I used to watch him on This Morning and he would diagnose lactose intolerance (or similar) by holding a pint of milk near a person’s back and pushing down on their outstretched arm. It was totally ludicrous pseudo-science. I used to sit laughing at the people who believed in him. I really can’t understand how he gets away with it. Presumably there must be more to his diagnostic tests if you actually pay for a session with him?! Coincidentally, for a while my brother lived in a flat next to de Vries’s Edinburgh clinic. Anyway, I digress - Grampian Health Foods is great and so much better than Holland & Barrett in Aberdeen.

I bought Green People Day Solution.

—

I’ve been looking for bookplates for Mum. I do not want to order bookplates from the US, so my choice has been rather limited. I saw some perfect ones (see left) on a website for a shop called Hebejewellery, but the site seems to have disappeared.

In my searches I have seen bookplates that I’d like for me. Foyles have some which I love - they are so appropriate for me. I haven’t ordered them, but I am sorely tempted.

You wouldn’t think that finding bookplates would be so tricky. I asked in Waterstones today and was told that lots of people ask about them, but that they don’t sell them. They referred me to WHSmith, but I didn’t have time to go there, maybe next time I’m in town.

—

I almost didn’t make my hospital appointment. The bus to the hospital was horrendously late and when it eventually did turn up it got stuck in traffic. In the end I had to run (!) when I got off the bus. Luckily, they must have been running a bit late, because no one seemed to notice I was late. I saw a registrar, not my usual (locum) consultant. He was young and nice, but clearly didn’t really know very much about my condition and its treatment, so he got a consultant. The consultant was also nice, and knew - or at least knew of - my old Edinburgh consultant. He seemed to be more knowledgeable about pemphigus than my regular consultant. He’s taking my prednisolone down from 15mg every day to 12.5mg and 15mg on alternating days for three weeks, then if everything goes well with that, then I should start on 12.5mg every day. I failed to mention the tremor, mainly because I was anxious about seeing new doctors. I think I’ll make an appointment with my GP and ask her about it.

My blood pressure was 125/60 - so much for it being high!

25 May 2007 May 25, 2007

Today’s post included a small mountain of parcels containing essential oils, hydrolats, natural (disposable) sanitary towels, biodegradable facial wipes and some other miscellaneous toiletries. I’m very impressed by the two companies I ordered these things from: Naturallythinking and Beauty Naturals (and no, I’m not an affiliate / on commission!). Everything was packaged well and as described, and they arrived so quickly … particularly impressive since Beauty Naturals do free postage with no minimum order amount.

I have been working my natural propaganda on Mum and have convinced her not to pay 12 pounds for Body Shop Shea Butter, but to get a big basic tub of the unrefined, pure stuff from eBay for half the price.

I realise that I haven’t actually written much about my pemphie, more about my holistic attempts to deal with it and get better. I’m a member of an email support group and today I was reading about different people’s Cellcept dosages - Cellcept is an immunosuppressant. I’m on 2g per day. On my last visit to my dermatologist I asked about whether upping my Cellcept dosage would help get me off the pred and he reacted like I’d asked something totally ridiculous. Anyway, from what I’ve read today it seems like the 2g dosage is old medical thinking based on worries about side-effects, but that more recent research suggests that dosages of 3 or even 4g per day are useful. I’m in two minds about whether upping my Cellcept dosage would be a good thing. On the one hand, I really want off the pred ASAP, but on the other hand it means more drugs in my system at least in the short term. I think I will bring it up at my next dermatology appointment, maybe taking along some research (if I can lay my hands on some) to back up the 3-4g dosage.

Btw, if anyone is ever curious about prednisolone, then I highly recommend Googling ‘prednisone OR prednisolone evil’, you’ll see why it is loathed by so many people, myself included … I should however point out that it does tend to work.

Foodwise, today has been good, though not necessarily from a calorific intake point of view! Mum went to one of those European Food Markets in a nearby village. She came back with some gorgeous bread, including fig bread which I think is possibly the nicest bread ever. She also bought me an apple tart which I had at lunchtime. It was fiiiine. For my tea I had noodles with Seeds of Change Sweet & Sour sauce (yum) and chicken.

While browsing for nothing in particular I came across NEEPS (North East Eco-friendly People’s Site) which looks like a handy local-interest forum.