me and my pemphie

living naturally with pemphigus

6 June 2007 June 6, 2007

Filed under: aromatherapy, crystals, food, job, natural living, pemphigus — blogarian @ 9:03 pm

 cherries

Excuse for having a random picture of cherries: I have been gorging myself on cherries. I think I might be going overboard on the cherries and pineapple at the moment, but I am making the most of summer.  I have such a sweet tooth.

I’m a member of a support group for people with pemphigus and someone on the group was asking about just how rare a disease it is. It’s something I’ve wondered too, with regard to pemphigus foliaceus. I know that PF is rarer than pemphigus vulgaris, and there is consequently far more information out there about PV than PF. Anyway, I got down to a little bit of research and found that there are approximately 0.5 - 1 new cases of PF per million people each year in Western Europe. Now Scotland has a population of 5,116,900 (GRO Scotland 2006 estimate), so there should be 2.5 - 5 new cases of PF each year in Scotland. In 2006 I was one of those people, and the same month and in the same city there was another new case of PF (a man about the same age as me).

With regards to all the new toiletries I’ve been trying: I am an absolute convert to homemade skin toner. I’ve been using witch hazel and rose hydrolats and they’re marvellous. So much nicer and seemingly far gentler than toners I have previously used (Simple, Clinique, Avene …).

I’m going to be slightly less evangelical about Burt’s Bees products. I tried the Garden Tomato Toner, but it would take a lot to impress me now when it comes to toner. It was okay, but to be honest I wouldn’t bother - make your own instead! I love the smell of Burt’s Bees products, and I like that the company is so open and honest about its ingredients and it’s desire to use natural ones. Having said that a lot of the products seem fairly interchangeable … what is the different between the lip balms / glosses and the cuticle creme? They look and feel identical and smearing my lips with cuticle creme and my cuticles with lip gloss seems to work as well as doing it the ‘correct’ way round. Actually, the raspberry and cherry lip glosses smell okay in their pots, but they tasted of nothing when on - it was impossible for me to tell them apart. The Milk and Honey Body Lotion sounded nice, but it’s a pretty light weight lotion and doesn’t smell particularly ‘milk and honey’-ish, in fact it is the one item by Burt’s Bees that I’ve tried where the scent was a let down. The Citrus Spice Exfoliating Shower Soap smells very much of orange and cinnamon, but it’s quite a masculine smell. As an exfoliating soap it did its job and well - it was just scratchy enough. Overall, the range - or at least what I’ve tried of it - has left me distinctly underwhelmed.

I found my turquoise earrings.  Mum had them - I give her most of my earrings on ‘long-term loan’, so her jewellery box is the first place I tend to look for things.  I love the colour and they go well with my favourite pashmina, but my main reason for my sudden desire for turquoise jewellery is for its believed healing properties in crystal therapy (see The Skeptic’s Dictionary to see what a load of nonsense it probably is).

Last night, with my headache still lingering and while I was adding stuff to the online grocery shopping, I spotted 4head.  It’s a little stick thing a bit like a stubby chapstick that you rub on your temples to help get rid of headaches.  It’s something that has been around for decades in varying forms and under different names - Mum says she can remember it from when she was a child.  So, I added some to the trolley at about £6 … then I went and looked at its ingredients: 100% levomenthol.  As far as I can see, levomenthol is a form of menthol, which comes from … drum roll … peppermint oil!  I immediately took the 4head out of the virtual trolley and ordered some carrier oils via  eBay instead - much cheaper and I’ll have the satisfaction of having made my own headache relief.  I’m really beginning to believe that peppermint oil is a bit of a must-have essential oil.

I got my Disclosure Scotland enhanced disclosure certificate.  It’s official: I have no criminal record or cautions, nor does the government hold any ‘relevant information’ on me (in other less coy words: I’m not a sex-offender).  Of course, I knew all this already, but it’s good that it’s official and that I now know ‘They’ haven’t messed up and confused me with someone less well-behaved.  It also means that the city council have no reason not to officially offer me the library assistant job that I interviewed for back in April.  The council had written to me to tell me that I was their ‘preferred candidate’ (although I presume I wasn’t the only one to get that letter), but that I had to get clearance from Disclosure Scotland before any job offer could be made.  I just hope it’s not all too late and that someone else hasn’t beaten me to it.

 

5 June 2007 June 5, 2007

Filed under: aromatherapy, diet, garden — blogarian @ 8:00 pm

I have a horrendous headache. Last night I went to bed, watched a little tv, read a little, then tried in vain to get to sleep,but was prevented by aforementioned horrendous headache and yet more nausea. I eventually passed out at about 4am while listening to some random radio station that was playing lullabies. I tried peppermint and lavender EOs, but I don’t think they did much. I woke up this morning and felt fine for about two seconds until I rolled over. I wonder if the headache is some sort of indication of detoxing, or a lack of caffeine yesterday. I think I only had one cup of coffee yesterday, whereas normally I’d probably drink at least five or six.

I spent a lot of time in the garden today, playing with the dog and helping Mum with the gardening. We’ve still not got the companion set I ordered over a week ago, but have finally finished all the pots and most of the beds. There’s still a lot of tidying to do, but it’s looking really lovely and I’ve been enjoying sitting out.

I did the online shopping today. Once again I have filled the virtual trolley with healthy foods and organic foods … my two small blips were a bottle of almond flavoured diet cola (just because it sounds so nice) and some liquorice. Today while feeling sick I had a craving for liquorice and a sense that it would settle my stomach, so I’m going with my instinct on that … well, information on Wikipedia seems to back up my craving-instinct, apparently liquorice “may soothe an upset stomach”.

 

22 May 2007 May 22, 2007

Filed under: aromatherapy, diet, eco-friendly, exercise, meds — blogarian @ 6:56 pm

I am being good. I did 20 minutes exercise today. I resisted adding (much) bad food to my virtual trolley. I also started an online food diary with FitDay. It isn’t ideal because it’s US based and so finding foods that are especially British/European or have different names is tricky. Also, the measurements tend to be in ‘cups’ and this means nothing to me - I have been imagining a small-ish tea cup stuffed with my food, but as far as I know this could be way out. I shall keep a look out for a similar (free) British food diary service.

I’ve been looking at essential oils, but it’s all so confusing. I do believe that aromatherapy oils can have some effect on mood. It’s been my experience that citrus-y oils are uplifting and lavender is relaxing, but even a cursory look around t’Internet shows that it’s a much more complex business. There is also some suggestion that some oils could boost the immune system, which is not good for me! Not only do I need to figure out which oils would be best for me, but I need to find a decent, reliable and cheap website that sells oils.

Last night - despite my pledge to stop using facial wipes altogether - I ordered some biodegradable wipes and some ‘natural’ sanitary towels from Beauty Naturals. It seems quite a good site, particularly since ALL the other places I looked charged for postage.

Mum picked up my repeat prescription meds today. The idea of stopping taking them keeps creeping into my head. I know that the pred can’t just be stopped, but the Cellcept doesn’t need to be tapered. Logically I know it’s a stupid idea and that I’ll probably have a massive flare up and end up being very ill and on a higher dose than I’m currently on, but I hate the meds so much. *sigh*