Saturday, June 1, 2013

Gabby's health journal - Part 5 - Month 3 Report

An interesting month. After 13 years of not knowing one other person with Schnitzler Syndrome, I have now linked up with 28 others via a support group on Facebook.  Their stories are all so strangely familiar, particularly the part about Kineret giving us our lives back.
So, on my 7th day of reducing my Kineret dosage to every 34 hours, I became very ill, so had to pull back a bit. I have now worked back to every 32 hours, without ill effects, and am staying there for a while. Talking to SS people on Facebook, only two of them have managed to get down to injections every two days; most others have to stick to every 24 hours, and one of them even gets ill again before the 24 hours is up.  So it seems I'm somewhere in the middle. None of them have developed lymphoma (yet), which may be due to taking Kineret.
I had my annual haematologist visit during the month and, apart from my protein spike (7.0), my blood results are "the most normal I've seen in a long time" says the doc. I'm well pleased.
My weight loss plateaud for a few weeks, but have started to lose a little again. Had one migraine in past month (just yesterday). My daily walks continue (except when "poorly").

Saturday, May 4, 2013

Gabby's health journal - Part 4 - Month 2 Report

Well, things are going pretty well.  I'm averaging half a kilogram per week weight loss, my blood pressure is good, and my fitness is improving. (I can climb to the top of the Kangaroo Point stairs now - 106 steps straight up!)  I have reduced my Kineret dosage to one injection every 34 hours and, except for one hiccup, things have been going smoothly.  I continue to increase the intervals by one hour for a week and hopefully I can reach 36 hourly intervals without my illness (Schnitzler Syndrome) recurring.

I didn't have a migraine for two months, and then had two migraines in quick succession.  But overall, I'm feeling well and have more energy for daily tasks, like housework.  I have even started gardening again.

Have also been doing Bones for Life (Feldenkrais) movements every day and that feels wonderful.  I do my heel bounces when I'm out walking - while waiting for traffic lights to change.  I've noticed that I'm using my body in better ways, e.g. picking something up from the floor, I spontaneously bend my knees and do not bend from the waist.

I can walk 12km without a problem and am "in training" for a 17km bush walk in June - the Kin Kin loop of the Noosa Trail.  One great (Brisbane) city walking loop is: Walk to Southbank, along river to Go Between Bridge, along Coronation Drive to Toowong Village.  Have breakfast then a read in the Toowong Library.  Continue walk through back streets of St Lucia, hugging the river, to The University of Queensland, and home again via the Eleanor Schonell Bridge and Dutton Park.  A variation of that walk is to take a side trip to the Mt Coot-tha Botanical Gardens.  Recently, I walked the 9km trip via the Eleanor Schonell Bridge to St Lucia, Toowong, then to Mt Coot-tha Botanical Gardens without a rest break.  This is a miracle considering that when I was last ill with Schnitzler Syndrome (about two years ago), I couldn't even walk to the corner shop without bursting out into tears and having to rest before returning home.

I've been reading up on Interleukin 1, which causes inflammation and which I have in excess.  Omega-3 fatty acids are a good dietary source to keep them under control.  So I'm making sure I have lots of foods containing these in my diet.  As a vegetarian, I use plant sources such as walnuts, leafy greens, flax seeds, tahini, chia seeds, pepitas, avocado, hommus, sesame seeds, alfalfa sprouts.

I'm still juicing for breakfast each day and adding a dessertspoon of chia seeds.  Chia seeds give you the most amazing bowel movements.  I just love my Oscar Neo juicer.  Have found a great source of organic kale at Flannery's, just a few minutes walk from home.

Incidentally, I just took part in the National Bowel Cancer screening program and the results were GOOD.

A great new juice recipe:
fennel, parsnip, apple, cucumber, pineapple, lime juice, ginger
It's a lovely pale green.  A couple of squeezes of lime juice gives it something special.

My latest recipe for bliss balls is:

Sprout organic wheat berries, sunflower seeds, quinoa, chia seeds, pepitas, flax seeds.
Soak almonds for 8 hours
Grind all the above through my Oscar Neo juicer (processing attachment), plus the following:
dried apricots/peaches/pears; dates; figs; sultanas.  (I have just bought some dried cranberries, which I'm going to add next time.)

After grinding, mix in cereal such as rolled oats, Just Right or Weetbix; and/or tahini. Coat with sesame seeds or dessicated coconut.  When I get some cacao, I'm going to try some of that with the mix.

I've also been making my own bread rolls ... hey, I'm on a roll.  To my basic wholemeal bread dough, I add sprouted wheat, quinoa, sunflower seeds, alfalfa and flax seeds.  All the good stuff!

Monday, April 1, 2013

Gabby's health journal - Part 3 - first month report

After finishing my first juice fast, I continued with healthy eating and regular exercise (mainly walking several kilometres per day).  I have had a vegie/fruit juice for breakfast each day and been eating my normal vegetarian food for the other two meals.  Also eating more salads.  I am not "dieting", but am eating a "healthy diet".

In the first month, I have lost 2kg and my blood pressure is in the 125-135/75-80 range.  My pulse rate is usually in the low 50's in the morning, but goes up to around 60 later in the day.  I'm happy with this progress, but expect my blood pressure to reduce further when my weight drops below 90kg.

Although I haven't lost much weight yet, I feel a lot better than I was.  Sometimes I almost feel a lightness in my step when I go walking. I am decreasing my medication (at my rheumatologist's suggestion) slowly - now injecting every 30 hours instead of every 24 hours and have experienced no problems.

I bought a new juicer - an Oscar Neo cold-pressed type - which also makes nut butters, hommus, bliss balls, pasta, etc.  I love it!  Am sprouting like crazy - fenugreek is my favourite - and have started soaking wheat berries to make rejuvelac.  Also making my own yogurt, hommus and nut butter.

Today I've started another short juice fast and feel pretty good.  I drink around 64 oz juice per day (four large glasses) (plus water and herbal tea).  The time taken to juice this much in one go is 28 minutes from start to finish.  This includes fruit/vegetable preparation time, juicing, cleaning up the juicer parts and reassembling.  It would be a lot faster with a centrifugal juicer, but I prefer the quieter start to my day + more juice extracted and less oxidation.

The chooks don't like the fruit/vegie pulp!  They peck at it a couple of times then walk away.  I'm wondering if the blue tongue lizard will eat it.  Will have to start putting it into muffins, etc.

Am meditating for an hour most mornings.

Sunday, March 10, 2013

Gabby's health journal - Part 2 - Meditation

DAY 8 - 10 March 2013

Woke up in a deep meditative state, so stayed in bed till around 10am.  Blood pressure up after meditation, but pulse rate down.  Strange.

In meditation, it feels like I'm travelling through a wormhole to another dimension.  There is clutter and obstruction along the way.  Sometimes it identifies itself; sometimes it doesn't.  That doesn't matter.  It's just obstruction.

I simply relax, breathe and watch.  The obstruction melts away and I continue to move towards my centre.  Sometimes it feels as though I'm watching lava flowing slowly from a volcano.  At other times, there is a release of putrefaction from my mind that I can taste and smell.  It is death and disease.

Yesterday, my aunt spoke of the ferry she used to catch when she was a child, down the Brisbane River to Redcliffe - the S.S. Koopa.  My uncle then said: "Yes, it continued on to Bribie Island from Redcliffe."

I then realised that this was the same ferry on which I had my first meditative experience when I was three years old.  Ferries are so iconic in terms of meditation and spirituality, aren't they?  Siddartha, in the novel by Herman Hesse, met a ferryman who learnt so much from watching the river; and he, too, became a ferryman.  In my case, I had the overwhelming feeling that watching the ocean would reconnect me with the universe.

My mind is an ocean full of flotsam and jetsam that doesn't belong there.

The journey continues.


First off:  warm water with squeeze of lemon.
Late breakfast:  Juice (apple, carrot, pear, peach, ginger)
Late lunch:  Eggplant bake on seed bread; leftover breakfast juice
Dinner:  Ricotta/avocado/tahini mashed with lemon juice, basil and pepper. Handful of cashews and pinenuts. Green tea.

B: 10am (N)
K: 6:30pm

DAY 9 - 11 March 2013

Meditative again this morning.  And blood pressure was up, but pulse rate was down, just like yesterday (146/76; 47 and 158/75; 45).  I thought meditation would reduce blood pressure, but that certainly doesn't seem to be the case with me at the moment.  My blood pressure and pulse rate returned to normal (127/66; 62) by the afternoon.

First thing:  warm water with squeeze of lemon.
Breakfast:  Juice (apple, pineapple, pear)
Lunch:  Seed bread sandwich (leftover ricotta/avocado mix & Vegemite); grapes; green tea.
Mid-afternoon:  Piece of fruit and nut bar
Dinner:  Minestrone and ricotta; fruit and nut bar; grapes

B: 9:45am (N)
K: 10pm

DAY 10 - 12 March 2013

Woke early. BP is up and PR down again. Took two readings:  151/79; 49 and 137/76; 46.  Strange how BP goes up while pulse rate goes down.

First thing:  warm water with squeeze of lemon
Breakfast:  Juice (apple, carrot, celery, cucumber) and chia seeds
Morning tea at craft: white tea, two crackers and cheese, bikkie.
Lunch: (takeaway) cauliflower and cheese pie (awful!); iced lemon tea
Mid-afternoon: few grapes, bit of frozen banana
Dinner:  Brown rice salad with ricotta (large serving)

Walked to and from craft at Greenslopes today.  9km round trip.

B:  10:50am (N)
K:  None

Saturday, March 9, 2013

Gabby's health journal - Part 1 - my first juice fast

As well as the food listed, I drink as much water as possible.

I've found walking to be the best thing for bringing down my blood pressure.  So I shall show when I walk each day as: WALK - YES

Blood pressure readings are taken in the morning before breakfast.

As this is my first juice fast, I am also recording my bowel movements (Bs).  Well, I find them very interesting!  Normally I have them twice a day.

I am fresh juicing with my old Breville juice fountain each day.  However, I've discovered that a centrifugal type juicer is not the best sort to use.  Cold press juicers extract more juice and nutrients, plus cause less oxidation (see Choice review online).

BP = blood pressure
PR = pulse rate
B = bowel movement
N = normal
R = runny
S = small
K = Kineret injection

DAY 1 - Sunday 3 March 2013
Weight: 93kg          Blood pressure:  165/88      Pulse rate:  56

Today I am preparing for a juice fast - not a long one - but I can't remember fasting (intentionally) for even half a day before.  So this is a new challenge for me.

Breakfast: Juice (apple, pear, carrot, celery, ginger)
Lunch: Home-made vegetarian minestrone, grapes, water
Mid-afternoon: Juice (kale, spinach, celery, carrot, kumara, parsnip, zucchini, rocket and nasturtium)
Dinner:  Minestrone, grapes, water

B - None.
K: 11pm

DAY 2 - Monday 4 March 2013
Breakfast: Peach and a few grapes. Water.
Lunch: Home-made vegetarian minestrone, water, juice (pear, apple, celery, carrot and cinnamon juice - YUM!)
Mid-afternoon: Peppermint and ginger tea
Dinner: My first mean, green juice a la Joe Cross - pleasantly surprised.  His recipe for mean green juice is: 6 kale leaves, 4 stalks celery, 1 cucumber, 2 green apples, half lemon (including skin), thumb-sized piece of ginger.

Found large bunch of very fresh organic kale at Flannery's - $6.50.  Fresh GREEN vegetable juice is a very important part of juice fasting.

B: 8:30am (N); 9:45am (R); 2:30pm (N)
K: None

DAY 3 - Tuesday 5 March 2013
First day of juice fast proper.

Breakfast: Mean green juice with pear and extra apple added
Mid-morning: Small portion of today's breakfast juice
Lunch: Normal portion of today's breakfast juice
Dinner: Juice (fennel, pineapple, carrot, apple, radish, spinach, celery, ginger - YUM!); half glass pineapple and peach juice - also YUM but the pineapple does give me mouth ulcers unfortunately; peppermint tea.

Still feeling fine.  Only occasional moments of desire for solid food, but they don't last long. No headaches. Don't know how long I will fast.  I'm taking it day by day. Blood pressure down to normal range.

B: 8:30pm (S)
K: 3:30am

DAY 4 - Wednesday 6 March 2013
BP: 126/73     PR: 64

First thing: warm water and squeeze of lemon
Breakfast:  Juice (orange, apple, peach, grape, rockmelon, pineapple, carrot, celery)
Mid-morning:  Breakfast juice with spinach and beetroot added
Mid-afternoon:  Juice (mango and watermelon)
6pm: Broke fast with a few grapes, bits of frozen banana and breakfast juice
Dinner:  Half an avocado; multigrain sandwich half vegemite/half peanut paste

Walked to the city - 6km round trip.  One hour after walk, BP down to 108/67.

B: 9:10am (R)
K: 6.45am

Well, that was interesting.  I survived my first juice fast better than I expected.
Now I know that I can do it, I will do it again.

DAY 5 - Thursday 7 March 2013
Weight:  91kg     BP:  127/77     PR:  51

Slowly returning to normal food.  Weight has started to come down and BP has returned to normal.  LOVELY.

First thing:  warm water and squeeze of lemon
Breakfast:  Grated frozen fruit residue pulp (peach and pineapple) and grated frozen banana
Mid-morning: Chewed a few organic wheat sprouts
Lunch:  Mashed avocado, lemon juice, ground kaffir lime leaves, tahini, pepper with crackers; grapes; peppermint tea
Mid-afternoon: Yummy fruit platter: mango, grapes, rockmelon, peach
4:40pm: Avocado and vegemite multigrain sandwich
7:30pm: 6 cashews
9:30pm: Wheat sprout porridge with honey and coconut milk

B: None
K:  9:30am

DAY 6 - Friday 8 March 2013
BP:  126/72     PR:  56

Officially the last day of juice fast (winding down)

First thing:  warm water and squeeze of lemon
Breakfast:  Slice of mango
Mid-morning:  Wheat sprout porridge with honey and coconut milk
Lunch (at Edna's):  Edna's lentil and vegie bake on white toast; bikkie and white tea
Mid-afternoon: Crackers and white tea
Dinner:  Tried to eat raw carrots, parsnip and celery, but couldn't chew them properly and they didn't taste good.  Had a cracker and a small piece of Allan's birthday cake instead.

B: noon (N)
K:  12:30pm

DAY 7 - Saturday 9 March 2013
BP:  120/69 (PERFECT!)     PR:  59

Still at Edna's this morning to see Jen off on her New Zealand cruise.  Went on Jen's "shaker" machine for 10 minutes and played Wii bowling with Edna.

Breakfast:  Juice (made by Jen with Edna's non-centrifugal juicer - a Kuvings Silent.  She cuts the food quite small and leaves it to soak in water for 10 minutes before juicing, which gives her time to go on her walking machine.) of apple, carrot, fennel, pear, kale, celery, silverbeet, parsnip with chia seeds added later.  CHIA seeds were great!  They were left long enough to swell.
Morning tea:  Fruit cake, crackers, white tea
Lunch:  1 piece seed bread with ricotta and tomato; 1 piece seed bread with strawberry jam; leftover breakfast juice, white tea
Mid-afternoon:  half a frozen banana
Dinner:  Home-made vegetarian minestrone; fruit platter (mango, peach, grapes); bikkie; chai latte

I have come to the conclusion that I need a cold-press juicer.  After hours of research on the internet, tonight I ordered an OSCAR NEO COLD-PRESS JUICER - $449 with free delivery.  This one does far more than just juice.  It has a very good reputation so I think it will be well worth the extra cost.  I'm excited.

I've been injecting Kineret every 27 hours for nearly a week with no ill effect.  Encouraging.

B:  9:30am (N)
K:  3:15pm

Gabby's health journal - Introduction

I have a rare auto-inflammatory disease called Schnitzler Syndrome for which I have to inject daily with Kineret (Anakinra).  This was on the Government's PBS list, so I only had to pay peanuts for it.  But a couple of years ago, it was taken off the PBS list, which meant that I was without it for about 6 months because I couldn't afford to buy it.  It costs around $12000+ per year.  And no other medication gives me any relief - except for long term, high dose steroids - which was out of the question. I was very, very ill.

Then the Mater Hospital, Brisbane, came to my rescue and agreed to pay this huge sum for me. I can't say how grateful I am to them because without Kineret my life is a living hell.

While I was without any medication, I lost 25kg and lots of my hair fell out because I found eating very difficult and I wasn't getting enough nutrition.  Once I started injecting again, however, my appetite returned ... with a vengeance ... and I ballooned up to 93kg.  My blood pressure also went up, of course. Coincidentally, around the same time, I came across the movie/documentary called Fat, Sick and Nearly Dead, which gave me the much needed boost to change things.

My rheumatologist had suggested I try to cut down on my dosage and I think this is a good idea.  I wouldn't be such an economic burden on the hospital and it would just be great to be less dependent on medication.  Ideally, I'd love to take zero meds, but if I could get it down to once every two days, that is probably more realistic.  However, at the moment even that is not possible.  I got very ill after just 30 hours without an injection.

But I'm hoping that healthy living may help me to change that situation and now I'm cutting down on my injections VERY SLOWLY - every 26 hours for a week; then every 27 hours, and so on.

So, I've started a juice fast and a health journal (see forthcoming posts).

Tuesday, February 5, 2013

"Smash" books on the cheap

I bought some good quality, bound books today from Reverse Garbage, Woolloongabba for 20c each.  Yes, that's 20 cents!  They are advertising material and are covered in pictures.
I have turned this:
into this:

My lavender and white page:

Still going.  Not finished yet.

And here's some pages of a lavender one I made for a friend:

Monday, February 4, 2013

My first smash books

I just discovered smash books.  I'm not a scrapbooker, but this seems like a quick and easy way to do something along those lines without the formality.  I made these from scratch with  card stock cut to A5 size for the pages, thick clear plastic to protect the front and back covers; and plastic ring binders.

I added decorations on some pages and left others blank.

I stuck a card from me in each one, with a message inside:

Here's some of the jazzed up pages:

(I love putting little pockets in them for "stuff")

An envelope stuck on the inside back cover to hold bits and pieces for decorating

A flappy piece creates a "secret place"

Tuesday, January 22, 2013

From clutz to crafter

Most of my life I considered myself to be a clutz, with big, shaky, clumsy hands that couldn't do much.  In Grade 1, the teacher stood us on the school verandah in front of sheets of butcher's paper and told us to "paint".  I just stood staring at the blank sheet and longed to be back in the classroom reciting times tables.  In Grade 3, I dreaded our hand sewing lessons.  While my best friend was dexterously making a sampler in a wondrous array of stitches, I sat there twiddling the cotton around my fingers, hoping that the teacher wouldn't notice.

Towards the end of primary school, my domestic science teacher took me aside and, despairingly, asked "Why don't you like domestic science?"  My brain was too confused to know how to answer.  But now I know that it wasn't that I didn't like it.  I just had this deeply ingrained belief that I was hopeless at it.  I actually loved it ... the theory parts ... and wished I could be capably sewing and cooking with the rest of the girls.

I was in my 50's before I had a go at craft.  I took it up mainly because, I guess, I was tired of being a non-crafter.  And I wanted to try to use my hands.  I saw a Christmas decoration hanging in a department store, had a look at how it was made and went home and made it.  What a breakthrough!  From there, I bought a coping saw for $10 and started cutting out shapes in craftwood to make jewellery.

Then one day while walking my dog I met another dog owner, Joyce, who invited me to her monthly card-making group at her home just a couple of streets away.  I had never made a card in my life!  Anyhow, I went along.  What a wonderful group - Joyce, several octogenarian Catholic nuns, two other ladies and me (an agnostic).  They were amazing - so mind-active in their 80's.  I learnt teabag folding, which I loved ...

... and iris folding...

... and pyramage ...

... and punch art ...

... and all sorts of other things.

So, after a hesitant start, I was off and running.  And I found out that I wasn't as hopeless as I had thought.  I'm still a bit of a clutz and get glue and glitter EVERYWHERE!  But I'm no longer afraid to have a go.  And I even teach card-making (mainly teabag folding) myself now.

I do get a bit of a shock, though, when people say things like: "Oh, you're good at craft."  In my mind, I'm still that 5 year old standing on the school verandah not knowing what to do with a paint brush.

The next chapter in my craft adventure was an exciting one too.

I watched a demo of the Pazzles Inspiration electronic cutter at a papercraft show.  I was hooked, but like Georgie Girl, I just window-shopped, never stopping to buy.  My scissor skills were non-existent, so the idea of a machine that did it for me was too much.  But I just dreamed about buying one.

Several months later I went to another craft show where, again, there was a Pazzles stall.  This time I bit the bullet and bought a machine.  But I wasn't very well around that time and, to be honest, I was scared of it, so my Pazzles sat, box unopened, in a spare bedroom for two years. (Actually, I think it was three years, but I've been too embarrassed to admit it.)

Then one day I got some energy from somewhere and set up my machine. After a few hiccups at the beginning while I got used to blade depth and pressure for the different paper/card stock, I became an addict.

An instruction book comes with the Pazzles, but it is far from comprehensive.  If you want to learn how to use the machine well, watch KLO's CLASSROOM on the Pazzles Craft Room at  She is wonderful.  You can join live or watch archived recorded classes, and you don't need to be a craft room member.  I'm working my way through all of them.

I have been going to the Friends and Neighbours craft group at Greenslopes for a few years, where I have learnt intarsia woodwork ...
Most of the wood used to make these pieces came from
Reverse Garbage, Woolloongabba.
They sell industrial offcuts that would otherwise end up as land fill.
A lot of the card stock I use comes from there too.
... bobbin lace-making ...

Bobbin lace roller pillows for continuous lace can cost hundreds of dollars.  I made mine from bits and pieces lying around the house.

And I made my own bobbins from bamboo, dowel, gumnuts and beads.

Yes, I am frugal.
I get much more pleasure out of "make do"
than having big shiny new things.
My Pazzles purchase was well and truly out of character.

... and quilling

... book covering ...

... some needlework and beading (can't find my pics yet)

I also crochet and do a little bit of sewing. I learnt patchwork a few years ago, which, sadly, turned out to be one of Ruth Stoneley's last classes.

I wish I could tell my domestic science teacher that I didn't turn out to be such a failure after all.

Happy crafting

(Written in the hope that other clutzes like me won't give up.)


As I walk by the river or sit in my tiny garden, not thinking of anything in particular, thoughts sometimes seep into my brain. If you'd like to read my seepage, here it is ...