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.

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.

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 May 2007 May 28, 2007

Ugh, ugh, ugh. I had an appointment with the nurse today. My blood tests came back fine, but my blood pressure was still a little high, so I’ve got to take it twice a day for the next week and take it in to her next Monday. It was something like 140/90 when she took it today, but I did it this evening and it was was fairly normal (130/80 or thereabouts). My heart was pounding when I was in seeing her, I just get so anxious.

I got a catalogue for Burt & Daisy through the post today. They do natural, organic skincare, beauty, baby and cleaning stuff. On the off chance that anyone ever stumbles upon this post and actually reads it here’s the offer they sent me with the catalogue (I’ve not tried it, so can’t guarantee it works, nor have I ever ordered from them so I can’t vouch for them personally):

“Receive £2.00 off your next order when you spend over £25! Just quote/enter Voucher Coder BD5234Z when you place your order, either online or by telephone. Valid from 1st May to 31st July 2007. Feel free to share this great offer with your family and friends.”

Also, I liked that the catalogue says it is printed on recycled paper with vegetable dye inks.

I’m not feeling very well today. My nausea is pretty bad and my stomach is churning. I can’t think that I’ve eaten anything particularly out of the ordinary: banana for breakfast, Quorn chicken burger, boiled tatties and salad for lunch, then Tesco Naturally Good Chicken Dijonnaise Tagliatelle (I picked the broccoli out - I’m such a child) and a chocolate Skinny Cow lolly for tea … nothing there that seems like it could make me ill surely. It’s probably the Cellcept, but the stomach churning is something new. My travel sickness bands are doing nothing today, but I am persisting with them. I was asking Mum about natural things which are good for nausea we didn’t get any further than mints and ginger, but she did say that she has a homeopathy book somewhere upstairs which might have some suggestions. Despite my skepticism about homeopathy, I’m willing to give anything a try right now.

Last night I once again fell asleep to my guided visualisation mp3. I’m never going to find out what the third exercise is at this rate. I’m still not sure how the second one ends. I remember my wise, healing thing being a rabbit and imagining myself lying on a warm bit of granite (which was remarkably comfy in my imagination) outside a little wooden cabin in the middle of some woods, then nothing. Fast asleep.

I cracked open my packet of Sante facial cleansing wipes this morning. They’re okay. I’m not keen on the fact that they require you (me) to rinse my face after use, this hasn’t been my practice in the past when using Simple facial wipes (but then again maybe I’ve been doing it wrong all these years!). They smell nice and feel nice, but they’re perhaps a little on the dry side. I’ve added some of the Tesco BNatural facial wipes to this week’s shopping, so I’ll see what they’re like and get a proper look at the ingredients list after they arrive on Thursday. I also added some Bionsen deodorant to the shopping. It’s one of these spritzy mineral deodorants where you add water to some crystals - it sounds more complicated than it is, I’m sure.

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.