me and my pemphie

living naturally with pemphigus

6 July 2007 July 6, 2007

Filed under: books, food, meds, pemphigus, prednisolone, shopping — blogarian @ 7:33 pm

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.

 

3 July 2007 July 3, 2007

Filed under: shopping — blogarian @ 9:52 pm

A couple of money off codes I’ve received for sites with good natural / ethical / organic products - enjoy!

EthicalSuperstore

£10 off when you spend £50 use code XTSALE at the checkout (offer ends 16th July 2007 and cannot be used in conjunction with any other discount offers).

LoveLula

Spend £25 or more at LoveLula.com before midnight on Sunday 8th July and you can claim £5 off your order by entering the discount code birthday1 on the shopping basket page. 

 

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.

 

28 June 2007 June 28, 2007

Filed under: animals, books, eco-friendly, exercise, plastic bags, prednisolone, shopping, yoga — blogarian @ 7:42 pm

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.

Pic of skinny person doing DDThis 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!

bookplatesI 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.

Bookplateother bookplateI’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

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!

 

22 June 2007 June 22, 2007

Filed under: animals, art, ecotricity, food, meditation, shopping — blogarian @ 11:33 pm

Environment: 

I finally caught the Government CO2 calculator in a good mood. My (individual) result: 1.75 tonnes. It’s so low because I don’t own a car, I don’t fly - I rely almost entirely on public transport and my own two feet.  The main suggestion for me seemed to be to switch to green electricity. Our electricity supplier isn’t down to me, but I’ve had a look at Scottish Hydro Electric’s green option - power2 and it seems like an easy sell. It apparently shouldn’t cost more than their regular tariff. Mum is all for being greener, but ultimately it would be Dad who would have to make the phone call. I’ve emailed him a not-so-gentle hint.

(Sacred) Art: 

mandalaI’m not a Buddhist.  I tend to tell people I am an atheist, but really I am more accurately an agnostic.  Anyway, that is all beside the point: I am not a Buddhist, but I have been looking at mandalas.  I have started to meditate to relax and one thing led to another and I found myself looking at websites about mandalas.  From what I can tell they are made and used to aid meditation by focussing the mind.  I like the artistic aspect to them.  I don’t think I’ll try meditating with one, but I think I might take inspiration from them - and the principles which guide their creation - for a little art project.  As a child I had one of those Spirograph toys, and I was curious to see if they were still being made.  Well, they are, but they’re not the same.  I see that there is also a Mandala Designer toy available (for all budding Buddhist children?).  There is even a computer programme called Mandala Painter.  I had a go with the programme trial and it’s quite fun (see piccie for my first, rather feeble attempt!).  I’d bet that with some practice it would be possible to produce some beautiful and interesting images.  I think that I’m going to focus my efforts on producing something with pens/pencils/paints and paper though.

 —

 Shopping:

I got my Natural Grocery order today.  I love getting parcels and this was one BIG parcel!  I’d ordered organic cordial, tea, noodles and liquorice, and they all arrived in perfect condition.  Ooh, all so yummy!  The slight delay in the delivery was more than made up for by the products and the free postage.  I’ll definitely be shopping there again.

I got more of the Cinnamon Yogi Tea, but I also got some Choco Yogi Tea which is even more scrummy, especially when you stick a bit of milk in it.  I really like the packaging too.   Each box has a yoga position on it with instructions and each tea bag has a wise little saying on it.

I opted for a garden-themed alternative pressie for Mum and Dad’s anniversary, and I also ordered at bird nest via the Ethical Superstore (I even got to ‘offset my carbon’ on the delivery).  Yes, it was a bit random, but it looked sweet and was very, very cheap!

Kitten cat update:

We’ve been keeping Dolly in since we got her.  The cat flap is on ‘in only’, so that Boo can get in (but she has to wail to be let out).  Anyway, I took Dolly outside today.  I just held her while we sat on the bench by the back door.  She was hyper-alert and the slightest noise or movement made her puff up her tail.  I brought her back into the house after a few minutes, but later on there was a strange noise coming from the utility room (where the cat flap is located).  Curiosity got the better of me and I had to have a look.  Dolly was whacking the cat flap with her paws, seemingly desperate to get out.  Part of me thinks that she should be let out to explore (or even find her way back to her original owners?!?), but the other part of me thinks that really she hasn’t been here long enough and doesn’t know her (new) name.  Also, I’m still not convinced that she’s not a kitten, so maybe she should be kept in until she’s older.  It’s hard to know what to do.  The vet seemed to think that after this amount of time it was unlikely that her original owners wanted her back, after all they have (apparently) done nothing to find her.  I think the cautious part of me will probably win this one at least for a couple more weeks.

 

21 June 2007 June 21, 2007

Filed under: environment, food, shopping, yoga — blogarian @ 10:40 pm

Oh, dear.  A return visit the Government’s CO2 calculator and it’s down:

Thank you for coming to see the Act on CO2 calculator. The calculator is proving extremely popular at the moment, so please come back shortly to calculate your carbon footprint and find out how to help tackle climate change.

 —

When I was at the GP’s surgery on Monday I spotted an notice up about a (relatively) local yoga group. The woman who runs it has a website - Inner Melodies - and blog. Some of the other (non-yoga) classes she runs look interesting, but maybe a bit ‘out there’ for me. I’m not sure I’d be comfortable getting in touch with my spiritual and/or feminine sides in front of strangers. I wish I could be the sort of person who went to tribal drumming workshops and yoga classes, but I think I’m destined to always be a closet-case when it comes to these sorts of things.

My NaturalGrocery order still hasn’t arrived. It was supposed to be delivered by courier yesterday but didn’t arrive. This doesn’t come as a huge surprise - couriers aren’t reliable when it comes to delivering out here.  Delivery today would have been okay, but it hasn’t happened and I’m a bit disappointed.  We’re already seeing the effects of cinnamon-tea-withdrawal!  There’s no way I’m staying in all day tomorrow, so it’ll be a pain if they try to deliver while I’m out.

Long story cut short(-ish): When I moved out of my old flat back in February, I didn’t get my security deposit back automatically and the management agency are being a bit petty about things. Despite the fact that nothing gas-powered worked in the flat and I was never connected to the gas they are demanding I produce a receipt for the final bill … hmm, there was no bill! This has been dragging on for months. They were just dreadful and sorted nothing that was broken or went wrong in the six months I was there. My big problem was that the flat wasn’t water-proof and they refused to do anything about it. It really wasn’t a fit place for someone with my compromised immune-system to be living. I’m sorely tempted to name and shame them, but will resist … for the moment at least. (Although if anyone is renting in Edinburgh from a small, independent agency, based in the New Town then feel free to ask which company I’m talking about!)

Checking out upcoming local events provided a modicum of amusement:  An exciting evening out can be had in Aboyne on July 25th when there is a lecture on midges!

A story from the BBC News website about a disappearing lake in Chile worries the hell out of me, especially while An Inconvenient Truth is so fresh in my mind!

 

 

18 June 2007 June 18, 2007

Filed under: animals, blood tests, consultant, nurse, pemphigus, shopping — blogarian @ 11:41 pm

Alternative Gift Catalogue logo So, yesterday was Fathers’ Day. Dad seemed pleased with his Spongebob dvd and QI book (apparently Richard Gere’s middle name is Tiffany). Now my mind turns to the next gift-giving event looming on the horizon: Mum and Dad’s wedding anniversary. A couple of years ago I started using World Vision’s Alternative Gift Catalogue. I’ve given the occasional Christmas, birthday and anniversary present from it since then. I had thought about giving my parents a bird bath for their garden, but an alternative gift seems so much more appropriate … now to choose!

Health:

I had yet another visit to the nurse today - another pin-cushion appointment. We discussed my bone density, all the drug side-effects and my general well-being. I need to go back in a month.

My last appointment with my consultant was on May 9th and my next was supposed to be six weeks later, but I haven’t had an appointment through. I rang the hospital this afternoon. It sounds like I have been forgotten / fallen through the cracks, but they will try to arrange an appointment for me … at some point. Hmpf.

Kitten update:

Firstly, Dolly is not a kitten!

Mum took her down to the vet today to see if she was microchipped, to have her vaccinated and wormed and to get her general health checked. The vet decided that she is probably 1-2 years old, and is just an exceptionally small cat. Looking at cat websites and the information on age and weight, we had figured that she must be 3-4 months old, but the vet spotted that she has some dental plaque on her teeth and so she can’t be very young. He couldn’t tell if she had been spayed or not, but gave us information on the warning signs that she’s in heat. He also had a look at her funny eye, but he couldn’t really tell what was wrong with it, but thought that it was probably nothing to worry about.

Apparently Dolly was a complete hit down at the vet’s, charmed everyone and had everyone coo-ing over her. Then she came back from her trip out and peed on Le Dog’s bed. Nice.