me and my pemphie

living naturally with pemphigus

July 20, 2008

Filed under: Cellcept, Dapsone, books, consultant, ill, job, meds, pemphigus, prednisolone — blogarian @ 10:32 pm

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 8) 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 7, 2008

Filed under: books — blogarian @ 3:35 pm

Saw this at the library last week and thought it was hilarious, so I had to share.  The romance novels are always good for a bit of a laugh.

The virgin bride said "wow!"

 

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.

 

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.

 

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!

 

 

15 June 2007 June 15, 2007

Filed under: animals, books, crystals, exercise, job, weight — blogarian @ 9:53 pm

News, news, news: I have a job! I start on July 10th as a library assistant for the City Council. I’m not quite sure where I’ll be based. It could be a bit of a roving position or it could be in the Central Library’s Reference Department. I’d prefer the latter, but the former would be fine, it’s a job after all. It’s just a temporary job for the summer, but it will be a good way to ease myself into work and get a bit more practical experience. I’m excited and scared.

Mum took me out for lunch in Alford. We also did a bit of shopping. There’s a shop there called Parade, it used to be part of Annie Mo’s, but went solo a while back. It has the most beautiful furniture, gifts, toys and jewellery. Mum was buying a big pink agate pendant for herself and bought me some very pretty silver earrings with milky white and yellow gemstones. I’d like to know what the gemstones are, it would be nice to know a bit more about them.

Dolly is still a total sleepy-heid. She has the odd burst of energy when she’ll play, but mostly she sleeps. I dug out some old cat toys. She shows little interest in balls with bells, but likes a strange, bright orange mouse toy. She also likes to chase a bit of wool. A few days ago I cut some holes in a big cardboard box and she seems to quite like hiding and playing in that, the problem: it’s a bit of an eyesore. We had a wee look to see if we could find one of those climbing/scratching/sleeping activity centre things for her, but couldn’t see anything suitable. Mum bought the local weekly newspaper - Dolly isn’t in there. I am completely baffled about why no one is looking for her. She is a lovely cat and has been looked after. She is beautiful, litter-trained, well behaved, friendly and doesn’t seem to be at all traumatised. The only possibility that occurs to me is that maybe she is ill and some <insert rude word> thought it would be better to ditch her rather than pay vet’s bills or give her to the CPL (or ‘Cats Protection’ as it now prefers to be called).

Mum and I just had a bit of a barney about anorexics. She was watching a programme about skinny celebrities. She’s a bit obsessed with weight, her own and other people’s. All day she has been commenting on people’s weight and it frustrates me. I wouldn’t want people commenting on my weight, so I try not to be critical of others (obviously there are times when I fail miserably!). I tend to assume that people who are very thin or very fat (myself included) have eating disorders and are ill and therefore deserve my sympathy/empathy and understanding rather than my criticism and judgement. Anything in between very thin and very fat, well who cares!? Being healthy is far more important. I really do try not to be hypocritical when it comes to weight and appearance, I, after all, am no oil painting. The Western world’s obsession with the very fat and the very thin saddens me, especially when it is all concerned with aesthetics.

This reminds me, while in Parade today I spotted (and sneakily read) a book called The Lady Who Was Beautiful Inside by Edward Monkton. It’s a wee book and it’s lovely. It has a very simple, very positive message - I think the title probably gives it away! I foresee me having to buy it for people for birthdays/Christmases/etc.

The lady who was beautiful inside

Finally, after asking around how other people had found doing yoga I have been convinced to give it a try. I opted for Yoga: Just my size with Megan Garcia and ordered it today.