me and my pemphie

living naturally with pemphigus

January 11, 2008

Filed under: travel — blogarian @ 11:17 pm

Today I found myself thinking about places I would like to visit.  There aren’t many places that I have the urge to see, but the more I think about it, the more I’d like to visit Egypt.  A trip down the Nile, the Pyramids, Alexandria ….

Then by coincidence I was looking at the Smithsonian Magazine website and this article:  The Smithsonian Life List.

From the list I’ve only been to the Louvre and seen the Aurora Borealis.  I saw the inside of a train station in Venice, but somehow I don’t think that counts!

I won’t be off to Egypt any time soon.  It’s apparently a bit of a chore to get there without flying, and I won’t fly any more.

 

January 7, 2008

Filed under: 101 things — blogarian @ 7:03 pm

I’ve really been enthusiastic about doing ’stuff’.  My 101 things list has motivated me.  I really do love crossing things off lists.

Lots of the things on my list are ongoing things which won’t get crossed off until my 1001 days are up, but there are a few specific things I am working on:

5.  Go to the theatre - I have booked a ticket for the ballet next week.  I’m going to see Scottish Ballet doing Sleeping Beauty and I’m really looking forward to it.

24.  Give blood - I phoned the Scottish National Blood Transfusion Service to see if I was eligible.  I eventually got to speak to a nurse who told me I wasn’t eligible and that I would never would be because my blood is nasty and dirty (I’m paraphrasing) and they must “protect patients” (I’m not paraphrasing).

36.  Take a first aid course - I got my confirmation letter through for the course I booked.  My course is on 21 February.  I’m nervous already.

40.  Complete my ECDL - Today I booked my final three tests for next week and the week after.  Fingers crossed I’ll pass, but I wouldn’t count on it.

56.  Cancel phone contract - Done!

57.  Recycle my old mobile phones - I saw today in the Cancer Research shop near where I work that they take old phones, so I’ll have to gather them up and take them in.

I should have had ‘Get my eyes tested’ on the list, because it is yet another thing I’ve been putting off for years, despite eye tests being free in Scotland.  Anyway, after work on Saturday buoyed up by getting other things done I went into Boots to ask about an appointment and was given one almost immediately.  Turns out my eyes are fine (despite the prednisolone) and my prescription hasn’t changed much.

 

101 things to do in 1001 days January 2, 2008

Filed under: 101 things — blogarian @ 4:05 pm

Yes, I’ve jumped on the bandwagon.  I am eschewing the traditional New Years’ Resolutions in favour of the increasingly popular 101 things in 1001 days.  I began yesterday, so my 1001 days are up on 28 September 2010.  It seems such a long way away.

My list has quite a few overlapping things, but I’ve tried to be realistic about what I can achieve, so I’ve not put in things like ‘become a millionaire’.  Also, I’ve unashamedly stolen ideas from other people who are doing the same challenge.  Oh, and I don’t mind admitting that I plan to tweak the list as I go.

My list in no particular order:

  1. Watch the sun set and rise
  2. Grow something edible (and eat it)
  3. Take photos of my family and friends
  4. Read 10 classic novels
  5. Go to the theatre
  6. Go to a concert
  7. Be creative
  8. Give to charity
  9. Go to a sporting event
  10. Learn something new
  11. Sample foreign foods
  12. Cook something
  13. Be more aware of what’s going on in my community
  14. Visit a museum
  15. Paint a picture
  16. Keep a diary
  17. Watch a Shakespeare play
  18. Begin to learn a new language
  19. Learn about the history of my country
  20. Read a book a month
  21. Take a trip on a steam train
  22. Take my own lunch to work instead of buying it
  23. Become more environmentally friendly
  24. Give blood (0845 30 17 2 70 between 9am to 5pm Monday to Friday)
  25. Protest about something I care about
  26. Get a tattoo
  27. Start writing a book
  28. Begin to learn sign language
  29. Learn to play a musical instrument
  30. Keep my room clean
  31. Eat my 5 a day
  32. Give a Kiva loan
  33. Knit something
  34. Keep a scrapbook
  35. Give old books to charity
  36. Take a first aid course  (21-FEB-0 8)
  37. Purge my wardrobe
  38. Register with a dentist
  39. Watch one foreign language film each month
  40. Complete ECDL
  41. Say no to plastic bags
  42. Join a club
  43. Make my dolls house
  44. Watch the BFI 100 (http://www.bfi.org.uk/features/bfi100/)
  45. Watch Best Picture Oscar winners (http://en.wikipedia.org/wiki/Academy_Award_for_Best_Picture)
  46. Come off all meds
  47. Remission
  48. Learn how stuff works (http://www.howstuffworks.com/)
  49. Vote in Scottish, National and local elections
  50. Go to a festival
  51. Pay off credit cards
  52. Learn how to use my Holga properly
  53. Apply for jobs
  54. Get a permanent job
  55. Create a budget and stick to it
  56. Cancel phone contract
  57. Recycle my old mobile phones
  58. Turn things off
  59. Make a will
  60. Write to someone who has inspired me
  61. Buy local
  62. Buy fair-trade
  63. Buy organic
  64. Live naturally
  65. Clean out my old toiletries and make up
  66. Take the stairs once a week
  67. Try watching less TV
  68. Eat more healthily
  69. Stop impulse buying
  70. Rent instead of buy
  71. Reduce, reuse recycle (http://www.reducereuserecycle.co.uk/)
  72. Stop my junk mail (http://www.mpsonline.org.uk/mpsr/)
  73. Learn who my MP, MSP, MEPs and councillors are
  74. Hug people
  75. Compliment people
  76. Use soap nuts more
  77. Keep in touch with friends and family
  78. Make and keep appointments for blood tests
  79. Re-pay Mum and Dad
  80. Buy a pot plant and keep it alive
  81. Make a wearable piece of clothing
  82. Take a daily multivitamin
  83. Give presents to friends/family even when it’s not a special occasion
  84. Learn how to cook
  85. Do laundry regularly
  86. Finish a Guardian crossword without help and without cheating
  87. Brush teeth at least twice a day
  88. Send thank you cards promptly for every present received
  89. For every item bought, get rid of another
  90. Fly a kite
  91. Try new foods
  92. Give handmade gifts where possible
  93. Calculate my carbon footprint and offset
  94. Go one day per month with no computer
  95. Go one day per month with no TV
  96. No pop except on special occasions
  97. Try to make new friends
  98. Write a letter to myself to be opened in 5 years time
  99. Start to make 1000 origami cranes
  100. Be a nicer person
  101. ?
 

02 October 2007 October 2, 2007

Filed under: job, pemphigus — blogarian @ 5:38 pm

Pemphie flare over the weekend.  I was a bit under the weather at work on Friday, then on Saturday morning I fainted and by Sunday I had blisters.  I guess it was a combination of being ill with a random bug, going down to Glasgow on the Thursday for Laura’s memorial service, trying to reduce my pred (I was just going down to 10/12.5mg) and finishing up my summer job.  I’ve upped my pred to 20mg to squash the flare.

The fainting spell and generally feeling ill was worrying.  I thought I was dying.

Today was officially my last day of my summer job.  Woo hoo!  I’ve really enjoyed it, but I’m just so tired and am absolutely in need of a rest.  I’m down as casual staff and have already been asked to do shifts.  I need to apply for a permanent job soon, but I might concentrate on finding on a part-time position which won’t tire me quite so much.

 

14 September 2007 September 14, 2007

Filed under: Cellcept, food, meds, natural living, sanpro, toiletries and beauty, weight — blogarian @ 8:12 pm

Well, it’s been a long time.  I’ve been busy with work (it feels nice to be able to write that).  I’ve been working 34 hours a week, but commuting time to and from work makes it much longer, and makes me feel much more tired.

I’ve been eating well.  The breadmaker is wonderful, and apart from homemade bread my diet is very close to being entirely organic.  I’ve also lost a wee bit of weight.

The rather generous wage I get from the council has meant that I’ve felt more able to spend money on quality toiletries and make up.   Of note have been Dr Hauschka’s Moisturising Day Cream (lovely and light) and Living Nature’s Dawn Light (a good match for my pale skin).

I was prompted to post today after receiving a comment from  Lloyd from Nappies Direct about their Naty products.  He has kindly pointed out that they have a new website dedicated to Naty products:  Naturalised.  I’ve bought, but yet to try some Naty sanpro.  They look and feel a bit more substantial (in a reassuring way, rather than a bulky way), than the Natracare sanpro, so hopefully they’ll do a better job (couldn’t really be worse!).

Yesterday,  for the first time I missed a dose of my Cellcept.  I’m not sure how serious a problem missing a dose is.  I felt a bit faint today, but that could have happened anyway.

 

12 August 2007 August 12, 2007

Filed under: Uncategorized — blogarian @ 1:05 pm

I just learned that a friend who I fell out of contact with killed herself a couple of weeks ago.  I hope she’s at peace now.

 

04 August 2007 August 4, 2007

Filed under: diet, exercise, job, pemphigus, prednisolone — blogarian @ 1:35 pm

Work is leaving me exhausted. At the end of each day I am so tired I can’t do anything, but collapse on the sofa or straight into bed. It hasn’t helped that I have started to reduce my pred. I’m making lots of mistakes at work, but I met the woman who started after me and she is making mistakes too, so I don’t feel quite so bad. I’m going to apply for a permanent, part time job at the library I’ve been working at the most. I’ve no idea if I’ve got any chance of getting the job. I figure that at least I wouldn’t need training and that I’m familiar with the library whereas most of the other applicants probably wouldn’t be. On the other hand, my boss knows about all my mistakes. She seems to like me, but maybe she’s just being nice.

This is the end of my first week reducing to 15/12.5 EOD of the pred. Today I woke to find a small cluster of blisters under my right breast. I will persist with the reduction unless things get much worse.

I’m getting quite a bit of exercise since I started work. I’m on my feet all day and I walk to and from the bus stop most days (about 1.5 miles). I have less opportunity to snack during the day, so I think I’m eating less than I was. Hopefully all this means that I’m losing weight … although I’ve yet to notice anything which would suggest this.

(Library mules!)

 

21 July 2007 July 21, 2007

Filed under: animals, books, film, food, immune system, job — blogarian @ 2:03 pm

The job is going well. I’m not making too many mistakes, and I’m gradually learning and remembering things. Every day something new crops up that I don’t know how to handle, but everyone is nice and patient with me. I have officially finished my two weeks of training now, and next week I am opening up one of the branches.  I think the situation is that I’m based at one branch, but will be sent to others as I am needed.

I got to choose the new dvds for the branch I’m based at.  It was good fun spending the Council’s money on films.  I think it must have been the selection for the month, but I’m not certain.

I’m exhausted all of the time, and my feet hurt a lot. Of course with the new job came new germs and my immune system is so compromised that I now have a cold which is making everything that little bit harder.

I’m eating quite well: lots of organic stuff, homemade bread (the breadmaker from Amazon still hasn’t arrived though), fruit and so on. I must be getting a fair amount of exercise. I’m on my feet all day from when I arrive at about 8.30am until I leave at 5pm (on an early shift), with just an hour at lunch to take the weight off. I’ve been lucky that so far I’ve had lifts in and out most days, but I’ve had to take the bus a few times which means a 20 minute walk each way.

There are perks to working in a library. I’m not entirely sure I’m supposed to, but I waived the fees on some dvds I rented for this weekend, thus saving myself a few quid. I’ve got Babel, Good Night and Good Luck a CSI: NY boxset - should keep me entertained for a wee while. The other perk of the job is free books. I get my pick of the withdrawn stock. Most of the books don’t appeal, but I did pick up Raw Spirit by Iain Banks. It’s his non-fiction, whisky trail book, and I’ve heard it’s good.

I’m learning what I like about library work, and it’s giving me a good insight into the sorts of things I want out of a library job.  I’ve learned that I quite like customer service, this surprises me as I’ve never been a very social person, and I’m quite shy.  On the other hand, I’ve learned that I really don’t know how to talk to children and that I know nothing about children’s books.  I don’t think I could be a school librarian for example.  I know now that I love information enquiries.  Things where I have to actually use my searching skills.  I don’t get to do much of this at the moment though.  The work is mostly issuing and discharging books/CDs/dvds, signing up new members, renewing leisure cards and straightening stock.

I watched Capote during the week.  I have very little to say about it.  It was good, but didn’t do much for me - maybe I was just too tired to appreciate it.  I think Philip Seymour Hoffman is a great actor, and he’s clearly a pretty good impersonator of Truman Capote - yes, he really did speak like that - just take a look at (or a ‘listen to’) him in Murder by Death!

New companion set arrived and is very comfy, but I’ve not had much chance to use it because of the dreadful weather. We also got our new suite. It looks odd in the living room, but I suppose that’s just because I’m not accustomed to it yet. I’m not convinced that it’s as comfortable as our old suite, but that’s probably just because it hasn’t been broken in yet.

Dolly is being allowed out now she is all vaccinated. She has gone from being a sweet little thing to a torturer of voles. Every morning she brings one in and plays with it until it dies or I take it away from her. It’s not an attractive trait.

Last week on my day off, Mum and I went to the Finzean Farm Shop. It is a great little place. We had a lovely lunch made from local produce and the tastiest organic bread, then filled a basket with even more food, including some Craigmyle cheese. They had all the different varieties, but I opted for the Morven. It was pretty expensive for a bit of cheese, but it’s tasty. We also drove past the Craigmyle Creamery, and it turns out Mum and Dad almost bought the house opposite and (we think) the land it is on.

 

10 July 2007 July 10, 2007

Filed under: job, pemphigus — blogarian @ 9:03 pm

Today was my first day at my new job and I am exhausted.  I’ve no idea how I’m going to cope with this for three months (never mind the prospect of working full time permanently).  I didn’t sleep well last night, because I was nervous and Boo was on my bed for most of the night which always disrupts my sleep.  I got a tour of the Central library in the morning, then spent the rest of my time shelving and on the issue/returns desk.  It was stressful and scary, and of course I felt like a total idiot for most of the day.  Hopefully it will get better.

I have quite a lot of new pemphie blisters.

 

6 July 2007 July 6, 2007

Filed under: books, food, meds, pemphigus, prednisolone, shopping — blogarian @ 7:33 pm

The day before yesterday was Mum and Dad’s wedding anniversary. Dad buggered off to Paris leaving Mum to be maudlin. Mum seemed to like the nest I gave her and Dad and welled up at the alternative gift. I didn’t see Dad before he left, but I spoke to him on the phone. Mum also had her retirement ‘do’ last night. She was dreading it, but I think she enjoyed it once she was their. She had been thinking that she wouldn’t get much despite having worked at the school for over 13 years. She was wrong. They gave her lots of little goodies and a cheque for a substantial amount for her to pass on to the DEC for the Darfur and Chad Crisis appeal (she’d told them that she didn’t want ’stuff’ but would rather donate to charity).

Because of the coincidence of retirement and anniversary the house is full to the rafters with cut flowers. I do love having flowers in the house, but I know that environmentally they’re generally a big no-no, mainly because of the CO2 emissions involved in getting the flowers from the producer to consumer fast. Ethically they’re generally not so good either unless you buy Fair Trade. The best advice seems to be either opt for a pot plant or buy local, seasonal flowers (easier said than done). There’s an initiative called Fair Flowers Fair Plants that is working to encourage the growth and sales of flowers and plants that are produced in an environmentally sensitive manner. Their website has a search facility so you can look for participating retailers in your area, but really there aren’t that many which is a real shame. No retailers north of Edinburgh that I could see.

More pemphie blisters. This time on my right shin and right wrist (I wonder what it is about the right side of my body?) They are tiny, but demoralising … and sore. Consequently, I am still stuck at 15mg of pred.  I feel really horrible right now.  The tiredness has now been (re-)joined by nausea and my world ’shimmy-ing’ (it’s a balance problem).  I spent last night holding on to my bed as I fell asleep because it felt like it was tipping and twisting underneath me.

I got my university results through for this year, not that I’ve actually done anything in the past year. I have officially failed my first attempt at the masters stage of my course because I didn’t submit (and pass obviously) my dissertation for May. My second (and final) attempt is due in October. I knew it was coming, but it’s not nice to get something saying you’ve failed.

I read Michael Tolliver Lives by Armistead Maupin a couple of days ago. I am such a huge fan of the Tales of the City series of books. I fell in love with all the characters as soon as I started reading the first book many, many years ago. It has been such a long wait for this latest (and last?) book, but it was worth the wait. I meant to re-read the previous books in anticipation of reading this last one, but didn’t get round to it, so I was a little hazy about where I had left the characters. The title probably gives away the fact that Mouse is still alive. The story is told from his point of view, so it’s mostly about him, but Maupin gives the reader updates on what has happened to all the Barbary Lane favourites - Mrs Madrigal, Brian, Mona and, of course, Mary Ann. Even more minor characters from previous books are referred to. I don’t think I’m giving too much away by saying that some of it is heartbreaking stuff and I spent most of the last few chapters in floods of tears.

Today, I took Mum out for a retirement lunch on her first day of freedom.  We went to Inverurie and while there we went and searched for (and found) The ‘Green’ Grocer.  I’d heard some good reports about the shop from fellow NEEPs.  It’s just a wee shop (opposite Farm Foods), but it is packed with local, organic, environmentally friendly foods, household goods and toiletries.  A little treasure trove.  We bought Crannach bread, local honey and some other stuff.

I’ve had a little button thing on my blog for a wee while now showing my support for Alan Johnston the BBC journalist who was kidnapped in Gaza. As most people will now know, there is finally some excellent news: he has been freed.