July 20, 2008

You’d think that no news would be good news, but alas no.  The infusions I had back in April failed.  I was blister-free for a couple of months, but that was not necessarily due to the infusions, could have just been the daily, oral prednisolone.

Anyway, two weeks ago I had a major flare up after I got a nasty stomach bug and my prednisolone had to go from 7mg to 40mg every day.

This morning I had a outpatient appointment at the dermatology clinic.  Another appointment, another doctor.  No explanation of what has become of my previous consultant.  My new consultant has taken me off the Cellcept (mycophenolate mofetil) and as soon as I can get my prescription filled, I will be starting on Dapsone.

I’ve had a bit of a read up on Dapsone, and I’m not all that impressed.  There doesn’t seem to be much evidence to support its use in cases of Pemphigus Foliaceous.

I also finally asked about whether I should be having bone density scans (because of the level and length of time I’ve been on the prednisolone), and apparently, apart from being a woman I have none of the risk factors … hmm, and here was me thinking that prednisolone itself was a risk factor!  So, I’m not getting bone scans.  I’m actually tempted to look into getting one done privately, just to put my mind at ease.

Other than the pemphie, I’ve started my summer job at the library.  Full time hours are taking their toll on me and I’m feeling very tired all the time.

I bought and read a book called Women, Work, and Autoimmune Disease: Keep Working, Girlfriend! by Rosalind Joffe and Joan Friedlander.  It’s not great.  I wanted practical advice that was relevant to me.  There are lots of little case studies which I couldn’t relate to.  I don’t have the option of flexible working hours, or asking someone else to do my work, or self-employment.  It was quite a superficial book that didn’t really tell me anything new or relevant.  It was a good idea, and may be relevant to many women with autoimmune diseases.  Also, I hated the ‘girlfriend’ bits - how horribly American and crass.

On the subject of books: I’ve been ‘doing’ the Richard and Judy Summer Read.  I’ve decided to stop being a snob and to actually read stuff that people ask about in the library.  So far the books have been okay.

I liked The Outcast by Sadie Jones (25/06/0 book, it reminded me of Atonement-lite, and as such I found it much more accessible and enjoyable (I just couldn’t get into Atonement, though I thoroughly enjoyed the film).  The self-injury in the book seem such a modern aspect to the story, but it nevertheless didn’t jar with the rest of the story.

I was much less keen on No Time For Goodbye by Linwood Barclay (02/07/08).  It was like a million other thrillers.  Nothing to make it standout.  The twist - oh, yes a twist - wasn’t even that cleverly done.  Perfectly readable, I suspect it will be one of the more popular ones from this summer’s book club, because it’s so straightforward (ugh, I really am a snob).

I’m currently reading East Of The Sun by Julia Gregson.  It’s absolutely not my normal sort of book - it’s the sort of book that I would associate with older women who like a Maeve Binchy / family-saga type of book.  It’s alright though.  It’s well written (actually, I believe the author is a former model which makes it all the more impressive - they are supposed to be stoopid, clotheshorses, not talented authors!), the detail is impressive and the characters likeable.  There’s a tiny bit of darkness under the surface with the bubbling unrest of ‘colonial’ India as the backdrop.

The second thriller on the list is this past week’s book, Down River by John Hart (16/07/08).  Much better than No Time For Goodbye.  All the blurbs and comments seem to say ‘Chandleresque’ and I’d have to echo that.  It’s noir-ish and different.  Again it has twists, but this time they are clever and keep the reader guessing.  I did guess the ending, at least in part, but I think what that shows is that it wasn’t plucked from nowhere - it made sense and with hindsight, looking back at the clues through the book the ending was believable.  It was the third of the first four books to feature self-injury (East of the Sun being the second) … an interesting theme for a tea-time, mainstream, warm and fuzzy, telly reading club!

Four more books to go.

April 10, 2008

I have escaped from hospital (a day early) - woo!

The prednisolone infusions seem to have gone well and without any horrible side-effects or reactions.  I had three lots of 1000mg over three days put in through a cannula.  Despite massive amounts of steroids running through my body I slept like a baby last night.  My blood sugar got up to 10.1, but the doctor was pretty impressed that it hadn’t gotten a lot higher considering everything.  My blood pressure has been perfect to slightly low (could be down to my expert use of my Dr Andrew Weil guided imagery audiobook!) .  My blood tests were all fine.

My daily dose of pred is being reduced by 5mg per week until I’m off the stuff, so tomorrow I’m down to 35mg.

I should be getting an appointment through to see my consultant in a few weeks (he didn’t make it in to see me while I was on the ward - hmm, no comment!).

While I was in hospital Mum got phone calls for me from work.  I am a preferred candidate for the summer job … so basically, as long as my references are okay and my Disclosure Scotland thing comes through okay, I have the job - hurrah.

I’m also working more hours next week, so I hope I don’t suddenly feel awful because of the treatment!

In more fun news, I’m off to see ‘And then there were none’ at the theatre on Saturday.  I have a small ‘And then there were none’ obsession, so I’m rather excited about this.

April 3, 2008

I eventually got a new dermatologist at Aberdeen Royal Infirmary’s dermatology unit.  I saw him a while back and he put my prednisolone up to 40mg.  He also suggested that I might benefit from high dose prednisolone infusions.  So, he consulted the head of dermatology in Aberdeen and he agreed.  The treatment basically consists of going into hospital and receiving very high doses of prednisolone over a period of three days.

Yesterday evening I got a phone call from the hospital saying that they had been expecting me to go in that day - first I’d heard!  Anyway, we have arranged that I will go in on Tuesday.  This is good for me because I’ve got no work for next week.

Also, I made a list of some of the links I use for my toiletries shopping:  Natural toiletries and cosmetics.

Yesterday, I had my interview for the summer job at the libraries.  As usual I said lots of inappropriate things - what is wrong with me?!?  I open my mouth and rubbish just spews out.  I’m still hopeful about getting the job though.

February 4, 2008

My monthly appointment with the nurse for blood tests turned into something of an epic visit - I was in for about an hour.  I can bitch about the NHS all I like, but I must admit that my local surgery does seem to still be interested in patient welfare rather than just statistics.  I can’t imagine that there are many practices out there that would be happy about hour-long appointments.

First we had a chat about the situation with the consultant and the Dermatology department in Aberdeen.  Then a discussion about my various side-effects.  Then can my BP.  My blood pressure was slightly high (133/94) - as it always seems to be when I get it done at the surgery.  Had my blood taken - though as both the nurse and I noted: if I have no consultant, then who gets (and checks) my blood test results?  It’s a mystery.  Then came the stuff that really took up the time.  The nurse asked if my blisters were worse, and they are so I explained about the pain and the ickiness of the open wounds, so she decided to sort me out with dressings (woo!).  It took a fair amount of time to figure out what I needed size-wise, and then we discovered that Tubegauze is not available on the NHS, only on private prescription (which I object to and can’t afford anyway).  The doctor has also prescribed me some heavy-duty painkillers.  A couple of times the nurse asked me about whether I was coping with work.  Hmm.  I’ve appreciated having no work for the past week and not just because of my cough and cold.  The pemphie can be debilitating.

I have been invited to be part of the surgery’s Patient Participation Group.  This is one way for me to be more active and involved in the local community, so I have accepted.  I met the Practice Manager today.  She’s nice and seemed enthusiastic about patients being involved.

January 28, 2008

I’ve been having a bit of a rough time with the pemphie.  It has flared up again and again.  No sooner does it start to disappear and I being to heal, it comes back, and always a little bit worse than the time before.

I was last at the hospital at the end of August and was supposed to return after two months.  I was eventually given an appointment at the end of November but couldn’t attend because I was away.  I let the hospital know in plenty time that I wouldn’t be able to make the November appointment.  And since then I’ve heard nothing.  I have made several phone calls to the Dermatology department and have repeatedly been fobbed off and told that I’ll be sent an appointment in due course.  I’ve even asked if it would be possible just to speak to a consultant and was told no.  As I understood it, the delay was because I was allocated a locum consultant who only visited when there were sufficient numbers of appointments ‘collected’.

Today,  I saw my GP.  He was fantastic and immediately phoned Dermatology to find out what the hell was going on.  I could only hear one end of the conversation, but they clearly began by trying to fob him off too, but he persisted and pointed out that I didn’t have a ‘minor skin condition’, and that my illness is a serious, chronic one.  Eventually, he got to the truth of the matter: the locum has left and all patients allocated to him have been abandoned!  No one thought to tell me or my GP (or presumably any of the locum’s other patients).  My GP was clearly angry.  So, now he has to re-refer me.  the whole situation is ridiculous and deeply worrying.  What on earth does NHS Grampian think it is doing?!?  I think I might write a letter to my MSP (Mike Rumbles), because although I’m being re-referred it’s only because my GP and I were both persistent, others might easily fall through the cracks and be forgotten about.

25 June 2007 June 25, 2007

The cats woke me up at some ungodly hour this morning (Dolly playing with a leaf and Boo wailing to get out) and I struggled to get back to sleep. Consequently, I’ve been even more tired than normal today. This would have been fine but for my trip to the hospital this afternoon.

I had some time to kill in town before heading to my appointment, so I bought a compost crock and then I went into Grampian Health Foods. I’d never been in before, but it’s a fantastic little shop. It’s my idea of shopping heaven at the moment. It has so many of the natural toiletries and organic/natural foods that I’ve been wanting to try - and so much more too. I was a little dubious about the shop after looking at its website and seeing references to Jan de Vries. I used to watch him on This Morning and he would diagnose lactose intolerance (or similar) by holding a pint of milk near a person’s back and pushing down on their outstretched arm. It was totally ludicrous pseudo-science. I used to sit laughing at the people who believed in him. I really can’t understand how he gets away with it. Presumably there must be more to his diagnostic tests if you actually pay for a session with him?! Coincidentally, for a while my brother lived in a flat next to de Vries’s Edinburgh clinic. Anyway, I digress - Grampian Health Foods is great and so much better than Holland & Barrett in Aberdeen.

I bought Green People Day Solution.

—

I’ve been looking for bookplates for Mum. I do not want to order bookplates from the US, so my choice has been rather limited. I saw some perfect ones (see left) on a website for a shop called Hebejewellery, but the site seems to have disappeared.

In my searches I have seen bookplates that I’d like for me. Foyles have some which I love - they are so appropriate for me. I haven’t ordered them, but I am sorely tempted.

You wouldn’t think that finding bookplates would be so tricky. I asked in Waterstones today and was told that lots of people ask about them, but that they don’t sell them. They referred me to WHSmith, but I didn’t have time to go there, maybe next time I’m in town.

—

I almost didn’t make my hospital appointment. The bus to the hospital was horrendously late and when it eventually did turn up it got stuck in traffic. In the end I had to run (!) when I got off the bus. Luckily, they must have been running a bit late, because no one seemed to notice I was late. I saw a registrar, not my usual (locum) consultant. He was young and nice, but clearly didn’t really know very much about my condition and its treatment, so he got a consultant. The consultant was also nice, and knew - or at least knew of - my old Edinburgh consultant. He seemed to be more knowledgeable about pemphigus than my regular consultant. He’s taking my prednisolone down from 15mg every day to 12.5mg and 15mg on alternating days for three weeks, then if everything goes well with that, then I should start on 12.5mg every day. I failed to mention the tremor, mainly because I was anxious about seeing new doctors. I think I’ll make an appointment with my GP and ask her about it.

My blood pressure was 125/60 - so much for it being high!

24 June 2007 June 24, 2007

 Another photie of Dolly.  She so cute.

 Pemphie

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

 

Food 

Loving Doves Farm Crispy Rice Bars.

 

Shopping

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

 

Film 

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

20 June 2007 June 20, 2007

David Miliband (would his socialist father be proud of him?) launched the Government’s CO2 calculator today. I tried it out, but got part way through then it froze - not a good start! I then tried the HTML version, it was painfully slow … and then it crashed and I gave up. Maybe it’s just launch day teething problems and heavy use.

—

I’ve been trying out some samples of Supersalve Skincare Balm. Ingredients, as listed on the website:

 

‘Calendula (Calendula Officinalis), St John’s Wort (Hypericum Perforatum), Lavender (Lavandula Officinalis), Tea Tree (Melaleuca Alternifolia), Clove (Eugenia Caryophyllata), Camphor (Cinnamomum Camphora), Eucalyptus (Eucalyptus Smithii), Rosemary (Rosmarinus Officinalis), Aloe Ferox Leaf Extract, Shea Butter (Butryospermum Parkii), Evening Primrose Oil (Oenothera Biennis), Wheatgerm Oil (Triticum Vulgare), Olive Fruit Extract (Olea Europaea), Apricot Kernel Oil (Prunus Armeniaca), Grapeseed Oil (Vitis Vinifera), Honey (Mel).’

The website is simple, but quite good, it has a fair bit of information on the ingredients and the debate around ‘natural’ products, although some of the most interesting stuff is hidden away.

Before I looked at the ingredients I would have said that it smelled of honey, but with honey so far down the list I think it must be the power of suggestion making me thing that.

I’ve tried it on my elbows (dry!) and my face. It’s a light cream; I thought it would be too light for my elbows, but it seems to be softening them up, pretty quickly too. It felt lovely going on my face and was absorbed well - no greasy feeling at all.

It’s not particularly cheap, but it’s not horrendously expensive either at £14.95 for 175ml tube.

—

This week, in a change from the norm, I did the (online) grocery shopping at Asda. They seem to have quite a good, big range of organic food, but not in all sections. There’s a fair amount of organic fruit and veg, but I was hard-pushed to find a packet of organic biscuits.

—

Came across the Recycled Products Guide on my travels through t’Internet today. It’s a search engine /directory for finding recycled products. Looks like it might be quite handy.

—

I got my official letter from the library with my start date etc. I’m still scared.

—

The hospital came through for me and I have an appointment for Monday afternoon with a consultant, although it’s not clear whether I’ll be seeing my consultant or not.

18 June 2007 June 18, 2007

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.