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.

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.

14 September 2007 September 14, 2007

Well, it’s been a long time.  I’ve been busy with work (it feels nice to be able to write that).  I’ve been working 34 hours a week, but commuting time to and from work makes it much longer, and makes me feel much more tired.

I’ve been eating well.  The breadmaker is wonderful, and apart from homemade bread my diet is very close to being entirely organic.  I’ve also lost a wee bit of weight.

The rather generous wage I get from the council has meant that I’ve felt more able to spend money on quality toiletries and make up.   Of note have been Dr Hauschka’s Moisturising Day Cream (lovely and light) and Living Nature’s Dawn Light (a good match for my pale skin).

I was prompted to post today after receiving a comment from  Lloyd from Nappies Direct about their Naty products.  He has kindly pointed out that they have a new website dedicated to Naty products:  Naturalised.  I’ve bought, but yet to try some Naty sanpro.  They look and feel a bit more substantial (in a reassuring way, rather than a bulky way), than the Natracare sanpro, so hopefully they’ll do a better job (couldn’t really be worse!).

Yesterday,  for the first time I missed a dose of my Cellcept.  I’m not sure how serious a problem missing a dose is.  I felt a bit faint today, but that could have happened anyway.

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.

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!

24 June 2007 June 24, 2007

 Another photie of Dolly.  She so cute.

 Pemphie

I have my appointment at the hospital tomorrow.  I hate going there, but I know it’s necessary.  I haven’t had too much pemphie-related ‘activity’ in the past few weeks, so I’m going to play down what I have had in the hope that my consultant will reduce my meds.  I’m also going to mention the tremor I seem to be developing.  It’s not constant, but it seems to be happening more and more.  It started with my hands, but now I can feel it right through my body - it’s a very strange sensation.

 

Food 

Loving Doves Farm Crispy Rice Bars.

 

Shopping

I got my stuff from the Ethical Superstore.  The nest thingy was better than I expected.  It looks really good.  And I got free date and walnut bars.  I do love a freebie!

 

Film 

Watched The Prestige last night.  Bloody brilliant.  I loved all the twists and turns in the plot (although I saw some of them coming).  The acting was spot on - I don’t even have anything bad to say about Scarlett Johansson (and I’m really not a fan of hers).  I’m looking forward to seeing The Illusionist now - I want to do a compare and contrast thing!

12 June 2007 June 12, 2007

 I missed updating yesterday, mainly due to a certain kitten-shaped distraction!

Kitten update

Boo still isn’t happy with the newcomer, but she’s tolerating her (bar the odd hiss and spit).  Boo is clearly the boss and the little one knows her place!  The newcomer still doesn’t have a name, although Miss Kitty, Missy and Kitty seem to be being used. She is small, sweet, confident and looks like a silent movie star (she looks like she’s got little pouty, bow lips). She and Le Dog are getting on well. When I got up yesterday morning they were sleeping side by side at the top of the stairs. Ha, she looks huge in this photo, but is in fact very dainty.

She’s been sleeping a lot and doesn’t seem very interested in playing, so we’re a wee bit concerned that maybe she’s poorly or depressed.  Then again, maybe she’s just tired out by all the upheaval she’s been through recently.

 

Health

I’ve been woozy-headed the past couple of days.  It’s difficult to describe how it feels.  Sometimes it just feels like the world is shimmying, but other times it feels like the world isn’t real.  I’m hesitant about mentioning the latter feeling to either my GP or my consultant - I don’t want them to think I’m (even more) bonkers-crazy.

I have some little raw blisters on my back, but mostly I’m going through a healing phase.  My armpits are quite swollen.  Presumably this is because my lymph glands have to work overtime to get the pred and other drugs out of my system.  I don’t think having my period at the moment helps all this.

 

Natural /Eco Living

I ordered a big-ish bag of soapnuts - I’m officially a convert!

I got a 10 pound off voucher for Lakeland, so I’m going to use it on a kitchen compost crock when the store finally reopens in town.

I got as far as choosing my veggie box, then discovered that it had to be paid by cheque, by post.  This is a pain.  I have a chequebook … somewhere, but I’ve no idea where (who uses cheques these days?).

I see that Tesco is now offering the option of delivering groceries un-bagged, just in the plastic delivery trays - hurrah.  Slight problem in that this isn’t available in all delivery areas, including mine.  I will however be keeping a look out for this option in the future.

 

 

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.