me and my pemphie

living naturally with pemphigus

21 July 2007 July 21, 2007

Filed under: animals, books, film, food, immune system, job — blogarian @ 2:03 pm

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 I get my pick of the withdrawn stock.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.

 

2 July 2007 July 2, 2007

Filed under: Cellcept, books, film, food, garden, job, meds, pemphigus, prednisolone, shopping — blogarian @ 12:48 pm

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.

Poems of Thomas Hardy

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.

 

24 June 2007 June 24, 2007

Filed under: animals, consultant, film, food, meds, pemphigus, shopping — blogarian @ 11:21 pm

She pooped in my bedroom this morning

 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!

 

14 June 2007 June 14, 2007

Filed under: animals, film — blogarian @ 5:55 pm

An Inconvenient TruthI watched An Inconvenient Truth this morning. I’m so glad I watched it. I have been wanting to see it since its cinema release. Unfortunately, I was in the hospital while it was on the big screen and it has taken this long for it to come to me via my dvd rental service.

Anyway, I was completely gripped by what is, in Gore’s own words, “a slide show”. I am now utterly scared by what we are doing to the planet. There are a lot of facts and figures in the documentary, but I was most stunned by the idea that the last ice age took just ten years to happen - from things to go from ‘normal’ to ice age. The fact that this could happen again scares the crap out of me. I just don’t understand why it doesn’t scare everyone into doing something!

I’ll admit that I’ve always found Gore quite charismatic - I never really got that ‘wooden’ label that he got stuck with during that presidential election - and he is clearly passionate and articulate when it comes to matters environmental. Sometimes the film seemed to drift off into being about him, rather than the environmental message, but it wasn’t too guilty of this, and I was interested to hear about where his interest in the environment had come from. It should be compulsory viewing without a doubt.

Kitten update

Miss Kitty has a name: Dolly. She has a weird, misshapen pupil, is desperate to go outside and is playing more than she was.

 

12 June 2007 June 12, 2007

Filed under: animals, film, meds, natural living, pemphigus, plastic bags — blogarian @ 8:54 pm

 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.

Miss Kitty

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.

 

 

 

8 June 2007 June 8, 2007

Filed under: birds, film, garden, hats, sleep, telogen effluvium, toiletries and beauty — blogarian @ 10:19 pm

I have the house to myself for the weekend - just me and the animals. I like the peace and the stillness.
I woke up extremely late today. I must have been tired because I woke naturally at … wait for it … 12.30pm! I woke feeling refreshed, but all day I’ve have had a niggling feeling of worry or guilt. It’s like I’ve forgotten to do something important.

Because I’ve got the house to myself I’ve been going hatless. This is novel for me. Ever since I left the hospital last September I’ve been wearing hats to cover up my baldy heid. No one seems absolutely certain of the cause of my hair loss. It started when the pemphie started and got worse when I was put on the meds. My previous consultant gave a diagnosis of telogen effluvium. Some women experience it after giving birth, but it can happen after trauma or serious illness, which fits with my experience. The alternative is that it’s a side effect of one of the many drugs I’m on. Whatever the cause I’ve become ‘a hat person’ since my hair loss began. I tried wigs - I bought three - but they all look so ‘wiggy’ and I felt silly wearing what was so obviously a wig. I’ve also tried bandanas, but on the whole I’m not comfortable with them because they make me look like I’ve got a pin-head - my head, however huge it actually is, looks tiny on my massive body. Hats work for me though. It’s been a real revelation. I wish I’d discovered the wonder of hats earlier. They mean you don’t have to wash or comb your hair. It makes being lazy a doddle.

The not-so-good thing about having the house to myself is that I don’t feel self-conscious about itching - and pemphie-itch can be so bad; sometimes I feel like I’m shredding my skin.  I think tonight I’m going to have a full-on pampering session and hope that slathering lotions and potions all over me distracts me from the need to scratch.

I watched DejaVu last night. Ugh, it was dreadful. How on earth does it get 7+ on IMDb?!? I found myself laughing at the ludicrous premise. Also, you’d think that since it had a half decent cast there would be some half decent acting, but they outdid themselves in the cheese and ham stakes. The plot was bad, the acting was bad, the script was bad, the special effects were passable. Avoid. I’ve got Lucky Number Slevin for tomorrow evening, hopefully it’ll be better … couldn’t really be worse.

I received a Dr Hauschka catalogue in the post today. It’s a beautiful, luscious looking and feeling catalogue and it made me want to buy one of everything, but by god it’s expensive stuff! I notice that the range is stocked by my local John Lewis store, so I might go in and have a proper look / feel / sniff and see if it’s worth getting in (further) debt over.

swallowMuch more exciting is the fact that we (probably) have a pair of swallows nesting in our garage. It’s so exciting for me. When I moved back home after being ill and in hospital I had a bit of a new found love of life and nature. Since then I’ve become more and more interested in the wildlife that visits the garden and the plants and trees that grow in it. It sounds so ignorant of me, but I couldn’t have told a swallow from a blackbird this time last year. I’m a late starter, but I’ve started to help Mum with the garden and I’m getting to know what all the plants are. Back in January Dad took part in the Big Garden Birdwatch and I started to learn the names of the birds that visit the garden and the bird feeders that I’ve been filling year after year every winter. Anyway, we’ve had our suspicions about swallows in the garage for a couple of weeks now. Mum and Dad have seen them flying in and out, but until today I hadn’t seen them. I’d seen evidence of them. Up in one corner of our very messy garage there are little blobs of mud hanging on the wall. They look like the very beginning of a swallows nest. I suspect this effort to build a nest was abandoned and that they have in fact set up home either in or above an old wardrobe we have in there (yeah, it’s that messy a garage). Our ‘garage cats’ (now both deceased) used to live in the wardrobe, so it’s nice to know that now the cats are gone that another creature is living there. I disturbed them though when I was going out to water the pots this evening and they flew out of the garage and round and round in swooping circles outside it until I had gone - maybe they were protecting the nest or just collecting insects. I’m so happy we have swallows. This reminds me: there was a terribly sweet story on the news last week about a couple who had blackbirds nesting in their bathroom (link to video).

 

4 June 2007 June 4, 2007

Filed under: blood pressure, cigarettes, eco-friendly, film, food, natural living, nurse, vaccinations — blogarian @ 10:43 pm

I had another appointment with the nurse this afternoon.  She was happier with my blood pressure, but I still have to go back again in two weeks.

Then I got the bus into town.  Lakeland was closed, so I couldn’t buy a compost crock for the kitchen - a bit of a disappointment.  I managed to make up for my failure to spend money on a crock by filling a basket full of goodies in Holland and Barrett.  I bought:  Cinnamon Spice Yogi tea (very cinnamon-y!), Nairn’s Ginger Oat Biscuits, Nairn’s Fruit & Spice Oat Biscuits (yum), tea tree oil and a bag of mini Eat Natural yogurt covered almond & apricot bars.  I bought a couple of books on natural remedies and a couple of magazines (Natural Health and Organic Life) - it was nice to see that WHSmith is trying to reduce the number of plastic bags it gives out.  Then I went in to Markies to buy a Fathers’ Day card for, well, my dad, but I was totally distracted by their fruit and ended up spending a small fortune on fruit salads and cherries instead.  I also bought a couple of their natural/healthy meals - a chicken one and a pork one.  I had the pork and mash meal for my tea and it was perfectly palatable, although the pork was a little low on flavour, but maybe that’s just pork.

I made a bit of a fool of myself in trying to catch a bus home.  I got really angry when my bus sailed past me as I stood at the bus stop … trouble was I was standing at the wrong bus stop - gah, I am such an eejit sometimes.  I went and had a fresh juice (raspberry, pear and pineapple - couldn’t taste the pear at all) at a juice bar, calmed myself down, then I called Dad and he gave me a lift home.  Why is it so hard to let go of both anger and embarrassment?  I’m sure that positive, ‘nice’ emotions don’t linger in the same way that the negative, nasty ones do.

I watched Perfume last night.  What a weird film.  Mum and I were discussing it at lunch time.  I think she understood the metaphors a bit better than I did.  I was going with some sort of idea about hedonism ultimately being unfulfilling, but to be honest I haven’t a clue what it was about.  I think it probably needs a second viewing … or maybe I need to read the book.

Imperfectly Natural WomanI finally got Imperfectly Natural Woman by Janey Lee Grace yesterday.  I pretty much read it from cover to cover in one sitting.  It’s good in that it gives lots of website and product recommendations.  I’d have liked to have seen more in depth information to support the suggestions, at times it read a little like a list of Janey Lee Grace’s Internet bookmarks.

Right from the start Janey (I feel like I know her now!) is frank about being “imperfectly natural”.  In the book there are little profiles of other ‘imperfectly natural people’.  Most of these people seem to be people in the natural living industry rather than people who just live their lives naturally.  Maybe I’m cynical, but I did find it amusing and ironic that some of these people seem horrified at the thought of drinking unfiltered water but were smokers (or had ‘just given up’).  Surely the chemical in cigarettes must be some of the worst we can possibly put in our bodies (bleached paper, arsenic, formaldehyde, lead … the list goes on and on)?!?  Oh, and cigarette filters are bad for the environment - they can take from 18 months to 500 years to break down! (Btw, that last link goes to a pdf file.)

I certainly didn’t agree with it all.  For one thing I think it is pretty irresponsible not to vaccinate children - this is another thing that repeatedly comes up in the profiles.  It’s not something I’m going to budge on.  I just need to look at what measles can do to convince me that childhood vaccinations are absolutely a good thing.  If anyone is in still doubt about the MMR vaccination, then there is an good (NHS) website I’d recommend looking at: MMR the facts.

Overall, I think that if the book is read with some healthy skepticism and you’re prepared to look for more detailed information yourself, then I’d recommend it.  It’s an easy read, ideal for dipping into, and it’s also very easy to warm to the author.

 

1 June 2007 June 1, 2007

Filed under: Derren Brown, Shouting At The Television, cheese, film, food, garden — blogarian @ 11:31 pm

<rant> This morning I found myself Shouting At The Television - a former favourite hobby of mine. It’s my habit to start and end the day with BBC News24 (and then to do my utmost to avoid the news in between times). So, late morning I was watching a news conference given by Tony “I’m a smug, arrogant, condescending ass” Blair and Thabo Mbeki. Blair had just finished saying something very important that he had to clear up because we are all idiots and couldn’t possibly understand things ourselves and Mbeki started to speak - no doubt to say something equally important (but probably minus the patronising tone) when Matthew Amroliwala decided that what Mbeki was about to say wasn’t important and reminded us that Blair was going to be asked a question by a “Western reporter” (clearly meaning a “more important reporter”). Grr. </rant>

Morven cheese

 Went to Millers for lunch with Mum. It’s such a strange place. You can buy animal feed, hire a digger, buy a bridle, have your lunch in their cafe, pick up a tin of beans, a newspaper, a jar of fancy home-made-style chutney, some locally grown strawberries, a dvd about tractors and spend a small fortune on a tweedy, conservative outfit all in the same place. It’s eclectic to say the least. I was on the look out for some local Craigmyle cheese, but they only had the Wee Wummle and I’m not all that fond of Camembert-style cheese, so I didn’t get any. Ideally, I’d like to try the Morven, at a push I’d give the Learney a go (partly because it’s named after our hill!) We came home with full bellies, a newspaper and some strawberries (which were very good).

At home I watched Mum plant things while I enjoyed sitting out in the sun. It was such a beautiful day here today.

While I remember: I watched Little Children last night. It was okay, although I probably wouldn’t bother watching it again, but mostly because it’s not my ‘type’ of film - it’s one of those arty, ensemble pieces where not a lot happens and there’s no real resolution at the end. The acting was excellent - I really felt a great deal for Kate Winslet’s character. The story was involving, but unfulfilling (oh, the irony!). I think the 8.0 rating that it currently has on IMDb is a little generous, but not too far off the mark. I have Perfume for Sunday night.

Tomorrow evening I am off into Aberdeen to see Derren Brown.  I’m looking forward to seeing him live, but I have my concerns.  I’m (almost) always impressed by what he does.  I just wonder how edited things are and if the live show will ruin spoil my high opinion of him.

If it weren’t for my plans for tomorrow evening I think I might have tried to persuade Mum and Dad that we should all go to the Taste of Grampian food and drink festival.  It looks like a good day out with lots of food, drink, crafts and entertainment.  As it is, I don’t want to tire myself out before the evening.  If Mum or Dad spontaneously suggested going for a wee while then I might say yes, but I’m not going to bring it up.

 

26 May 2007 May 26, 2007

Filed under: film, garden, guided imagery, meditation — blogarian @ 10:34 pm

Bench!Still tired. In fact I’m constantly tired. Ugh, this is just going to get worse as my pred goes down.

I feel asleep last night while listening to my guided visualisation mp3 … I seem to vaguely recall not being able to imagine what my ‘healing voice’ looked like, then the next thing I knew it was 6am. I was burning peppermint essential oil and I was so relaxed and snuggly on my bed, so it doesn’t surprise me that I fell asleep so easily last night.

This morning I got up late and watched some News 24. It was a lovely day here and I spent some of it in the garden and some of it dragging Dad around a garden centre spending lots of his money on plants. We went there to buy a companion-style bench that Mum had seen a couple of weeks earlier, but we failed on that score.

I had some nausea today, but it passed quite quickly. I was wearing my travel sickness bands, so maybe they helped.

This evening we all settled down to watch Snakes on a Plane. Genius. ‘Nuff said.