me and my pemphie

living naturally with pemphigus

31 May 2007 May 31, 2007

Filed under: blood pressure, eco-friendly — blogarian @ 9:18 pm

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.

Head to Toe starter kitI 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

Filed under: blood pressure, eco-friendly, exercise, immune system, natural living — blogarian @ 9:06 pm

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 think maybe I am a smug twat - sorry!

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

Filed under: blood pressure, eco-friendly, immune system, natural living — blogarian @ 7:02 pm

Regular sized pot!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.

Rabbit

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.

 

27 May 2007 May 27, 2007

Filed under: diet, eco-friendly, garden, natural living — blogarian @ 8:13 pm

I ordered the bench pictured in the previous post from Dobbies this morning. It’ll be nice to sit out on it with a cup of coffee and watch the natural world go by. It doesn’t appear to be FSC certified wood which I feel slightly guilty about.

The parentals went into town to buy stuff, so I set them a mission to spend my book token on Imperfectly Natural Woman by Janey Lee Grace. I do like book tokens, but I wish they could be spent online. They failed in their mission. Now the question is do I just cave in and buy it from The Book Depository or do I wait until next weekend and finally get rid of my book token?

The NEEPS forum has some good links. I was astonished to find that there is an organic veggie box supplier called Vital Veg just down the road from where I live (I’m currently trying to persuade Mum to give them a go). I also found a handy website to find veg box schemes near you. I also found a link to a handy list of toxic chemicals that can be found in most everyday toiletries. It’s on a commercial website for natural and organic toiletries so the source isn’t exactly neutral, but then again where is?!

Soap NutsMy spending spree continues (Must. Stop. Spending. Money) and I have bought a sample of Soap Nuts. I have only just convinced to switch from Tesco non-bio tablets to Tesco Naturally non-bio tablets, so I’m not sure how she’s going to respond to sticking berry shells (they aren’t really nuts apparently) in the washing machine. I was looking at Aquaballs and Ecoballs and other similar ‘ball’ things, but I don’t really understand the science behind them. I asked Mum and Dad (both ex-science teachers) and they seem to think that using the balls is akin to the old fashioned method of washing things by bashing them against rocks at the rivers edge. I sort of understand how soap works - it’s to do with allowing bonds to be made between the water and the grease I think. I presume there is some sort of similar science going on with soap nuts. Anyway, I’ll give them a go and if they work great and I’ll buy some more, if they don’t then I’ve only forked out 1.50, so no great loss.

Final link for the day: The Alcohol-Free Shop. Now, usually I’m not one to turn down an alcoholic drink, but the contents of The Alcohol-Free Shop appeal to me. I love a yummy drink, I have been known to drink about 2l of Diet Coke a day, but the new me now eschews chemical-filled fizzy drinks. This week I’ve been drinking soda and lime, and fizzy water. Yes, there are still chemicals in the lime cordial, but not as many. I’m also giving my liver a little bit of a break and haven’t had a glass of wine in over a week. Anyway, there are alcohol-free wines, beers, juices and soft-drinks, amongst other things.

 

26 May 2007 May 26, 2007

Filed under: film, garden, guided imagery, meditation — blogarian @ 10:34 pm

Bench!Still tired. In fact I’m constantly tired. Ugh, this is just going to get worse as my pred goes down.

I feel asleep last night while listening to my guided visualisation mp3 … I seem to vaguely recall not being able to imagine what my ‘healing voice’ looked like, then the next thing I knew it was 6am. I was burning peppermint essential oil and I was so relaxed and snuggly on my bed, so it doesn’t surprise me that I fell asleep so easily last night.

This morning I got up late and watched some News 24. It was a lovely day here and I spent some of it in the garden and some of it dragging Dad around a garden centre spending lots of his money on plants. We went there to buy a companion-style bench that Mum had seen a couple of weeks earlier, but we failed on that score.

I had some nausea today, but it passed quite quickly. I was wearing my travel sickness bands, so maybe they helped.

This evening we all settled down to watch Snakes on a Plane. Genius. ‘Nuff said.

 

25 May 2007 May 25, 2007

Filed under: Cellcept, diet, eco-friendly, meds, natural living, prednisolone — blogarian @ 9:31 pm

Today’s post included a small mountain of parcels containing essential oils, hydrolats, natural (disposable) sanitary towels, biodegradable facial wipes and some other miscellaneous toiletries. I’m very impressed by the two companies I ordered these things from: Naturallythinking and Beauty Naturals (and no, I’m not an affiliate / on commission!). Everything was packaged well and as described, and they arrived so quickly … particularly impressive since Beauty Naturals do free postage with no minimum order amount.

I have been working my natural propaganda on Mum and have convinced her not to pay 12 pounds for Body Shop Shea Butter, but to get a big basic tub of the unrefined, pure stuff from eBay for half the price.

I realise that I haven’t actually written much about my pemphie, more about my holistic attempts to deal with it and get better. I’m a member of an email support group and today I was reading about different people’s Cellcept dosages - Cellcept is an immunosuppressant. I’m on 2g per day. On my last visit to my dermatologist I asked about whether upping my Cellcept dosage would help get me off the pred and he reacted like I’d asked something totally ridiculous. Anyway, from what I’ve read today it seems like the 2g dosage is old medical thinking based on worries about side-effects, but that more recent research suggests that dosages of 3 or even 4g per day are useful. I’m in two minds about whether upping my Cellcept dosage would be a good thing. On the one hand, I really want off the pred ASAP, but on the other hand it means more drugs in my system at least in the short term. I think I will bring it up at my next dermatology appointment, maybe taking along some research (if I can lay my hands on some) to back up the 3-4g dosage.

Btw, if anyone is ever curious about prednisolone, then I highly recommend Googling ‘prednisone OR prednisolone evil’, you’ll see why it is loathed by so many people, myself included … I should however point out that it does tend to work.

Foodwise, today has been good, though not necessarily from a calorific intake point of view! Mum went to one of those European Food Markets in a nearby village. She came back with some gorgeous bread, including fig bread which I think is possibly the nicest bread ever. She also bought me an apple tart which I had at lunchtime. It was fiiiine. For my tea I had noodles with Seeds of Change Sweet & Sour sauce (yum) and chicken.

While browsing for nothing in particular I came across NEEPS (North East Eco-friendly People’s Site) which looks like a handy local-interest forum.

 

24 May 2007 May 24, 2007

Filed under: Tales of the City, diet — blogarian @ 11:19 pm

Michael Tolliver LivesI am exhausted. I can barely keep my eyes open. I think this is due to getting up this morning before my body was ready to get up. I had to get up because the Tesco’s mannie was due with all my nutritious goodies. I don’t think I’ve ever been so excited about fruit / veg / organic stir fry sauces / etc. I’ve had a day of eating rather healthily. The only thing that has been particularly ‘chemically’ was my Skinny Cow lolly (yum) … oh, and the gazillion mugs of coffee I’ve drunk today.

I bid on some Burt’s Bees stuff on eBay and won. I’ve got Marshmallow Vanishing Creme, Raspberry Lip Gloss, Cherry Lip Gloss and a Head to Toe Starter Kit winging it’s way to me. I’m going to smell like a fruit salad - hurrah!

I’m also very, very, very excited about the upcoming release of Michael Tolliver Lives by Armistead Maupin (see left). I pre-ordered it today and plan to re-read the other Tales of the City novels between now and the 18th of June. It’s been such a long wait. Maybe the Moon and The Night Listener were good, but I need to know what Mouse is up to these days!

 

23 May 2007 May 23, 2007

Filed under: complementary, crystals, eco-friendly, sanpro — blogarian @ 10:04 pm

Once I go for something, I really go for it. Last night I purged my toiletries drawer of just about everything. This has forced me into buying lots of natural / SLS-free / paraben-free toiletries. I splurged on some essential oils and some bottles of flower water from Naturallythinking. I have also been totally sucked in by the look and descriptions of Burt’s Bees products.

I also spent a little bit of time looking at the supposed healing properties of crystals. I know that it’s garbage, but still I might dig out my turquoise earrings.

Sckoon reusable padsI’m slightly more persuaded by the argument for washable - and therefore reusable - sanitary towels. I hadn’t heard of them before, but they seem like quite a good - if slightly yucky - idea. I’d heard of mooncups before, but had immediately decided they weren’t for me as I prefer to use pads, so discovering that there was a pad option was an interesting revelation. If they were easily available in the Britain, for a decent price and they looked as nice as the ones from Sckoon (see left) then I think I might take the plunge. There would of course be the issue of washing and drying them in a house I share with my mum and dad - practically the definition of ‘awkward’.

(Daily 20 minutes exercise - done!)

 

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*