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.

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.

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.

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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!

4 June 2007 June 4, 2007

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.

I 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.

3 June 2007 June 3, 2007

 

Last night’s trip to see Derren Brown’s ‘Evening of Wonders’ was bloody brilliant. The man is a genius. I had a fantastic seat, close to the stage in the stalls. I’ve had so much fun trying to figure out how he did all the tricks, and I’m getting there gradually. I’m not someone who needs the mystique to be maintained - I need to know all the secrets! The second half of the show was a reproduction of some Victorian magic/psychic tricks like the levitating table and ‘The Oracle’. There were none of the physical feats of the ‘Something Wicked’ tour. It was more a mind reading show with virtually all of the pieces involving the audience’s participation. Googling Derren’s name and the tour name will reveal much discussion/debate/speculation on how the tricks are done so I won’t bore with my theories. I will say that I did spot how the Oracle trick was done, although even knowing that I’m still impressed with Derren’s abilities; I’m sure I couldn’t do it!

I’m very glad I didn’t go to the Taste of Grampian event. As it was I was out from 5.30pm until 12.30am, and I am feeling pretty rough today.

I woke this morning at 5.30am to the most awful smell of oil. The Aga had gone out in the night and the whole house had filled with oil fumes. I was almost sick. I had to open the windows to get some fresh air into the house despite it being a cold morning. I eventually got back to sleep at about 7am and snuck in a couple more hours of sleep before Mum brought me my breakfast. I’m still feeling a bit nauseous though. I think this is probably the Aga off for the summer, there seems little point in relighting it only to have to switch it off again in a couple of weeks because the kitchen is unbearably hot (we have an old Aga that doesn’t do varying temperatures).

I still haven’t found myself a new facial moisturiser. Perhaps I should wait until I’ve finished off my No7 stuff.

BP: 117/84 (am)

31 May 2007 May 31, 2007

I counted the number of plastic bags which Tesco used to deliver my shopping: 31! If I physically go to Tesco and pack my shopping myself I use about 12 hessian and/or ‘bag for life’ bags. Today, the Radio Times came in its own bag, so did The Herald, so did some batteries, so did some sponges. Now, I can’t for the life of me imagine why these things couldn’t all be put in the same plastic bag. Also, my soda water comes in packs of four bottles with a handy attached handle … and yet each pack of four was put in a plastic bag which promptly fell apart when I tried to pick up the bottles. I can feel an angry email bubbling up inside me.

I got my soap nuts today. They look good, like they might be a tasty snack and not really something to wash my clothes with. I am now on the look out for clothes which aren’t just worn, but are properly dirty. This shouldn’t be too much trouble as I am forever dropping food and drink down my front. I will report back.

I also go my Burt’s Bees Head to Toe starter kit and lip balms today. Yum, yum, yum. I am in love with the Almond hand cream. I haven’t tried everything out, but it all smells fiiiine. I tried to put my makeup on on top of the Marshmallow Vanishing Creme - what a disaster. It was like trying when you try to put a second coat of nail varnish on when the first isn’t properly dry. I had to wash my face and start all over again. I don’t think there’s any way I’m going to be converted to it. It does smell pretty gorgeous though - a bit like banana flavoured sweeties.

BP:  125/82 (pm)

 

 

30 May 2007 May 30, 2007

Well, now I feel bad (and rather embarrassed). Julia Hailes commented on my last post. I guess my response is that I don’t want the people I look to for advice to be less than perfect. I want them to be model greenies. After all, if Julia Hailes can’t be green, then how can I? I suppose I am idealistic and overzealous as only a newbie can be. As for the plastic bag thing, it just goes against all my instincts. The statistics are shocking and go against everything I believed. The Worldwatch Institute also notes that neither plastic nor paper bags are good for the environment, backing up Hailes’s assertions.

I imagine that the ideal solution is to use neither, but rather to opt for almost infinitely reusable hessian / cloth / string bags. Anyway, I am going to get hold of the book, and I will read what she says … and I will try to keep an open mind. I promise.

The mere mention of plastic bags brings on feelings of guilt for me. I do the household weekly shopping online from Tesco (yes, that evil corporate monster that is destroying local communities - I feel guilt over that too), and every week my shopping is delivered in gazillions (quite possibly not an exaggeration!) of plastic bags many of which contain just a single item. I just don’t understand why they do this. The plastic bags themselves are transported in plastic pallets. I do return the previous week’s bags for recycling, but there must be a better way of doing things. We plan on ordering our first veggie box next week, so hopefully we’ll gradually wean ourselves off the convenience of Tesco home delivery.

I’ve been doing a little, informal, uneducated eco-audit of my life. I’ve used online carbon-footprint calculators to figure things out, and I am suitably disgusted by my household results. My Dad flies a lot for business and refuses to off-set, because he claims that off-set schemes are seriously flawed. He may be right, but doing something is better than nothing surely? The house I live in is an environmental nightmare. It’s old and poorly insulated for a start. We have an Aga that has two settings: very hot or off. About 90% of the light bulbs we use are not low-energy. Electrical equipment regularly gets left on standby (not by me though). On the plus side, we recycle like maniacs. I’m not sure whether our wood-burning stove is a good or a bad thing. It heats the house well, and the wood is from well managed sources. My understanding is that wood is a carbon neutral fuel, but a quick search reveals some debate on the pros and cons of wood-burning. I don’t drive, nor do I fly. I use buses, trains and my own two feet. I do get driven places though, like my weekly lunch out with Mum or my occasional trip to the pictures or garden centre with Dad. There is plenty of scope for improvement!

Changing the subject: I slapped on the Marshmallow Vanishing Creme last night. It’s quite solid in the pot, and then when I put it on it seemed like there was an oily part to it which smoothed on well, then a solid part which sat on my skin and was trickier to get rubbed in and absorbed. That’s not a very good explanation, but it’s the best I can muster. My skin didn’t feel especially moisturised afterwards. I think I might have to look for a moisturising lotion rather than cream, my skin must be drier than I thought. Suggestions are welcome.

I lieu of doing any exercise today (because it was peeing down outside and the dog was being awkward … and to be honest I was feeling lazy), I vacuumed. It’s so silly that something so small drains me of all energy. These drugs and this illness are a pain. I woke up with more blisters on my legs. This is getting me down a bit. It did cross my mind that my new healthier lifestyle may be boosting my immune system (not good). Alternatively it could be stress or something totally random.

Dad has me doing some unofficial research on natural disasters in South East Asia. It too is depressing me. It’s so much easier to live in ignorance.

BP: 112/91 (am)

29 May 2007 May 29, 2007

Today’s post brought tainted joy and outright disappointment. I got my NCIS dvds (woo!), this was marred by the customs fee I had to pay (grr!). Serves me right for ordering dvds from the US with a massive carbon footprint. I also got my Burt’s Bees Marshmallow Vanishing Creme that I bought via eBay. Instead of the regular sized pot that was shown on the auction listing I got a teeny tiny sample pot that is probably enough for one use. Serves me right for ordering moisturiser from Hong Kong with a massive carbon footprint. I’ve never done it before, but this time I left negative feedback, the listing was deliberately misleading imho, so I don’t feel too guilty about it. I am slightly worried about retaliatory negative feedback though - it would spoil my 6+ years of perfect, whiter-than-white feedback.  Ooh, I received an email from the seller offering me a free lip balm if I withdrew my negative feedback … um, no I have plenty of lip balm and not enough moisturiser!

Now my problem is whether to buy a bigger pot of the Marshmallow Vanishing Creme or to find a different facial moisturiser. I bought a wee pot of ‘base’ moisturiser to add essential oils to from Naturallythinking, but I’m not keen on it. It doesn’t seem very moisturising for a start. Also, looking at the ingredients list for it - it doesn’t look all that natural to me! It works quite well as a mattifying cream, but I’ve had to go back to my chemical-filled No7 Hydration Day Cream, until I can find something natural that actually works.

I’ve been looking for a book - or books - which give advice on environmentally friendly living and came across The New Green Consumer Guide by Julia Hailes.  It’s an updated version of a book written in 1988 by Hailes and John Elkington.  It looked like it might be a book worth borrowing from the library, but then I looked at Julia Hailes’s website.   She is supposedly an expert, but she does seem to be a bit of a fair-weather greenie.  Plastic bags aren’t really all that bad and she’s fine with being green so long as it doesn’t cost her anything.  I was disappointed.  I want my green-leaders to be beyond reproach.  I still might look out for the book, and I’ve added her blog to my blogroll, but I’m not convinced.

Today is a bad day with regards to the pemphie.  I have blisters.  I noticed last night that I had little blisters at the sides of my boobs where my bra underwires had been rubbing.  This morning I woke to find one on the inside of my right forearm and one on my right knee.  These are all places where I seem to be particularly prone to getting blisters.  I’m not going to put on any steroid cream, instead I’ve burst the blisters and put on some witch-hazel hydolat.  Prompted by this latest flare up and my lack of anything natural to put on the blisters that would target them more specifically than the witch-hazel, I did some Googling and found no natural alternatives to steroid creams.

While Googling I did come across something called colostrum, which as far as I can tell is found in breast milk (human and animal), and which helps strengthen and balance the immune system.  I’m going to have a bit of a root around and see if I can find out a bit more about it and whether it really does work.

BP: 130/80 (pm)

28 May 2007 May 28, 2007

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

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

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

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

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

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

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