me and my pemphie

living naturally with pemphigus

February 4, 2008

Filed under: blood pressure, consultant, meds, nurse, pemphigus — blogarian @ 2:49 pm

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.

 

18 June 2007 June 18, 2007

Filed under: animals, blood tests, consultant, nurse, pemphigus, shopping — blogarian @ 11:41 pm

Alternative Gift Catalogue logo 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.

 

4 June 2007 June 4, 2007

Filed under: blood pressure, cigarettes, eco-friendly, film, food, natural living, nurse, vaccinations — blogarian @ 10:43 pm

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.

Imperfectly Natural WomanI 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.

 

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.

 

Nursie! May 21, 2007

Filed under: blood tests, diet, eco-friendly, nurse — blogarian @ 7:03 pm

I had a ‘pin cushion’ appointment today.  The nurse was very friendly, but I just hate it.  She expected me to know what my doctor wanted done and when - like he actually tells me stuff!?  So, anyway, I had the usual ‘hmm, your veins are well hidden’ comment, then vials of just about every variety were filled with my blood.

Nice though the nurse was, she did insist on doing more than just take my blood.  She took my blood pressure: high.  She weighed me: ugh.  She tried to persuade me to diet … the Slimfast way: um, I actually like to chew my food.  I have to go back next week so she can check my blood pressure again, and presumably try and do a bit more arm twisting with regards to dieting.

I know my diet is crap and that I don’t do enough exercise, but it’s easier said than done to change things.  I have filled my virtual Tesco trolley with slightly healthier food than normal, so I’m trying.

My current baby steps towards a healthier mind and body (and world) have also included the radical decision to stop using facial wipes!  Apparently there are old-fangled things called ‘face cloths’ that do the job just as well.