Today

Today has been a housey sort of day.  I've been quite busy this last week and things are getting a little bit untidy around here.  Even for my poor standards!

There's been some washing of clothes and dishes, a little bit of gardening and lots and lots of putting things away.  There has even been some craft room sorting.  The craft room is permanently the biggest pigsty in the world.  Every time I try to tidy it, it just seems to revert straight back to chaos.  You may think I am exaggerating, but I am most definitely not.  So today I took in some plastic boxes and starting sorting the piles and piles of crap all over the floor.  A box for paper craft stuff, one for embroidery bits, another for rogue ribbons that have escaped from my last attempt at trying to organise the craft room. 

Actually, I'm quite proud of my ribbon organisation. I saw the idea on pinterest to wrap ribbons around a popstick but I had a bag of dolly pegs lying around and decided to have a go at doing that.  I'm pretty happy with how it turned out.  I need to go and get another jar for some more.  The back jar is all my grosgrain ribbons, just clipped together with a paper clip and I left all my stuff on spools, on spools and sorted them neatly into a storage box. 

If only I could snap my fingers and make the rest of the room look this organised.


Another box I sorted holds a bit of a mish mash of items.

Some knitting I started with a scarf in mind until I decided that the ribbing was too tight for how I wanted it to look, as well as some buttons and some material scraps from my drawers of such goodies.  What for?

Well, every year (apart from last year) since I started blogging I've thought about making a softie for the Softies for Mirabel drive run by Pip.  And every year I fail.

This year I'm determined.  In fact, I want to make more than one.  I feel like I have catching up to do.  So this box holds the ingredients for the first one.  Thursday's creative space perhaps?

Now however, it is time to wade back in return to the craft room and try and get a few more little spots of organisation happening.

Wish me luck!

Out of hospital and health update

  
I'm out of hospital, they let me out yesterday, a day earlier than I was expecting!  Super yay!

I've got some new drugs to try and help my lungs, as they have gotten no better and a little bit worse in the month since I started treatment for them and if the drugs don't begin to work in the three weeks before my next check up with the pulminary docs they want me back in for some IV treatment.  So fingers crossed big time there!! I am planning to not be back in hospital Any Time Soon.  I can now also add endocrinologists to the gamut of specialists dealing with my case as the tests they ran show my adrenal glands are working and yet my cortisol is low so my hepatology docs want to consult with them to decide what to do about it.  Also, my BCR-ABL results (leukaemia concentration in blood) have come back from the February tests and show they have risen a little bit, from 5.6 to 8.8%  Not good, but not toooooo bad either.  My haemotologist said she wants to see two spikes in my levels before she needs to put me back on meds but they want to get the lungs and the adrenal glands sorted out first anyhow.  My liver count is finally back under 35 (where it is meant to be) after over a month, very excited about that and my kidneys are almost back to normal too.  They are attributing their rise in numbers to a mixture of my immunosuppressant and antifungal medications so they have lowered the immunosuppresants slightly while I get over all these stupid fungal and bacterial infections.

And that's the latest in my health news.  Ahh, I miss the days where I could wrap up health news in a sentence.  Oh, I had a cold last week but I'm better now. If only.  Now I just sound like a contender for the World's Biggest Hypochondriac.  Please God, don't let that become a new reality TV show. 

Anyhow, just a quick post from me today, I'll probably be absent for a few days because I have a housewarming party to organise and hold - whee! It certainly won't be anything like the spectacular parties I see hosted on some of your blogs.  I am making a coleslaw, a potato bake and perhaps a plate or two of nibbles.  MR is in charge of BBQ duties with whoever else that volunteers on the day and I have had six very kind and helpful people offer to bring more salads for me.  I am trying to be very casual and not my usual crazy over-catering self who thinks of lots of yummy things she could make that take many hours of preparation.  There will be no bunting, no rainbow cakes, no fancy colour themes, no themes at all for that matter.  Just a typical run of the mill Aussie BBQ.  And that is fine by me.  It will just be nice to spend time with friends and family.  MR's parents are coming down Saturday night and my Mum is coming around a bit early on Sunday to help us to get everything organised without me getting worn out.  And then all I have to stress over is making sure all our different groups of friends interact and no one gets left feeling lonely!

Looking forward to catching up on everyone's blogs when I'm back. x




A Year of Good Things
73/366 ::For Transplant Australia::
My Run for a Reason fundraiser page reached and passed it's target of $1000, I'm now up to $1045, two whole months before the event! Time for a target raising!  Thanks to those bloggy people who have donated, you know who you are!! 

74/366 ::For me::
Out of hospital on my liver's five month anniversary - yay!

75/366 ::For my meow::
Lots of cuddles and attention after being left alone (the neighbour fed her) for 3 days and 2 nights

All sorts of good stuff

Life has restarted!  I have more energy and am doing okay with my 40% reduction in lung capacity.  The medications are hopefully working and I am doing what I can to help them.

Yesterday morning I had a lovely massage and in the evening I went to my first yoga session.  It was a gentle hatha and meditation session so not too much and I managed all the poses in between puffing (although not as flexibly as others) so I was happy.  The meditation session at the end was good too, my therapist has me doing self guided ones at home but it is nice to do it with a real person as well.  I'm hopeful that a bit of gentle exercise will help my lungs recover.

Not only that but Thursday I went for a 2km walk! There was a tremendous amount of huffing and puffing for the slow pace I was taking and thank goodness I went by myself because there would not have been enough oxygen for chatting but I felt good afterwards.  Back on track, fingers crossed!  Now I just need to keep it up.

And finally in my good stuff news, I went to the Roxette concert with my sister on Wednesday night!  Wheeee, it was awesome. Very. Very. Awesome.  I got to dress up in a pretty top, jeans and heels and we went out for dinner first and I had a delicious grilled barramundi on a bed of kipler potatoes and cacciatore with broccolini.  Mmm mm.  We had good seats at the concert and it was a small enough venue that there was no need for big tv screens or anything.  All the songs came back and I had great fun singing along to all my old favourites.  Yay!

one grainy iphone photo

It's so nice to get back into doing normal type things and not feel absolutely shattered afterwards.  I'm hoping it continues!


A Year of Good Things (hopefully back on track!)

60/366 ::For normalness feelings::
I went out for dinner and to Roxette, had an awesome time Wooo!

61/366 ::For fitness::
I went for a 2km walk.

62/366 ::For relaxation:: 
A full body massage, so nice and relaxing, followed by a yoga and meditation session. 
 

Numbers

  
I've been incredibly slack on the Good Things front.  I blame not leaving the house apart from for doctors appointments. Actually, I've been incredibly slack on all fronts.  There has not been a lot of anything going on in my house apart from reading.  But I haven't been at my house much this week and at hospital there have been numerous things going on.

This week I have/had: (including tomorrow)

3 blood tests
(which took about) 16 vials of blood
1 chest xray
1 CT scan of lungs
2 liver check ups
5 days of a red welted rash covering my legs
1 dermatologist appointment
1 referal for drug allergy testing 
1 haemotology appointment
2 counselling sessions
1 kinaesiology appointment
1 Chi Gong meditation class
$13.20 parking fees plus,
$8.80 of free parking because the paying machine was broken
$69.40 worth of prescriptions

and

0 liver gym classes
because I don't want to infect the other immunosuppressed liver patients with my chest infection/whatever bug it is and also because I barely have enough breath for a long sentence, let alone lifting weights or pedalling a bike for 5 minutes.

However, the news is not entirely dire on the Good Things front.

The day before yesterday I signed up to do the HBF Run for a Reason.  It's on here in Perth on the 27th May.  I signed up to do the 4km leg.  14km is a bit extreme and seeing as I still cannot run without feeling like my liver is painfully bouncing around inside of me like a bag of oranges being double bounced on a trampoline, I am going to walk.  Maybe I'll aim to do the 4km at a run next year?  Who knows.  We'll see!

My reason for Running Walking is because I want my life to return to a bit of normality and by getting fit and re-building up my stomach muscle strength I will be able to not feel sore and have more energy, two things that are hindering me at the moment.  So once I get over this annoying lurgy, I will be endeavouring to go walking Regularly.  At least twice a week.  And seeing as I am recovering from a liver transplant, I decided that my charity of choice would be Transplant Australia.  I am aiming to raise $1000.  I am 1/10 of the way there already!! Just 18 more $50 donations or 45 more $20 donations and I will be there!  I'd love it if you could help me! You don't have to do a big one like $50 or even $20, $5 is just as lovely!

You can go and read more about my reasons and about Transplant Australia on my Everyday Heroes website.  Please feel free to share the link around blogosphere and beyond, I'd love to reach and maybe even pass my target!




A Year of Good Things
::30/366::  For Transplant Australia and myself
I signed up to do the HBF Run for Reason, raising money for Transplant Australia and getting fit and healthy in the process!

 

Drenched. Happy.

  

Some people walk in the rain, others just get wet.

- Roger Miller

I love summer rain.  Really, I love any rain, but summer rain is the best to go walking in.  Today I didn't bother with walking though.  I just stood in the backyard and savoured it.  Don't you love the feeling of dozens of big fat plonky rain drops hitting your skin all at the same time?  The assault of your senses with the sound of thousands of raindrops hitting the roof interspersed with loud claps of thunder (that make you jump and almost fall backwards over a chair), that wonderful summer rain smell, the feel as the raindrops hit, causing you to tingle all over.  So invigorating.  You just can't help but feel alive.

 Ok, yes it's our shed.  But look at the rain!

Drenched.  Happy.  Alive.

 

  

  

 

A Year of Good Things

26/366 ::For my soul::

Standing outside in the rain, soaking in the energy.

Happy Liversary

Today, or rather yesterday seeing as it's after midnight, my liver had its three month birthday.  It felt like it should be a somewhat momentus occasion, except it wasn't.  MR being away and me staying at home the whole day by myself in my pyjamas.  So I baked it some cupcakes.  Raspberry cream cheese cupcakes.  My favourite.  My liver's too coincidentally.  Actually, it would be nice to know what my liver's favourite cake used to be.  Or  favourite anything.  You know, so I can mark the occasion in proper form. 

Also coincidentally, yesterday Curlypops gave me the heads up about the FilmLife Project as a part of Donate Life Week in February.  So I'm joining in with the Blogger's Challenge.  I'm not quite ready to put my face out there on national everything to talk about it on film.  Small steps.  I'll get there.  It's just still a bit too fresh.  You can join in the blogger's challenge too.  You don't have to have had a transplant, or even know someone who has.  We're all just doing what we can to raise awareness about organ donation.  I wouldn't be here without it.

What’s your take on or experience with organ donation, and why did you choose to take part in the FilmLife Blogger Challenge?

Until very recently, my experience with organ donation was minimal.  A signed consent form saying yes, I'd like to donate my organs when I first got my license.  A discussion with my Dad which didn't convince him that he'd say yes if he ever had to face that decision.  A discussion with my sister to encourage Dad to say yes.  Her telling me likewise.  

Until a day in September last year when I ended up in hospital with advanced liver failure.  You see, I also was diagnosed with Chronic Myeloid Leukaemia in March 2011 and the medication I took for that decided to chew up my liver.  Except I didn't notice.  Apart from feeling a bit more tired than normal I was fine.  And my leukaemia medication caused fatigue and it was the end of term at school so I didn't think too much on it.  Then, I started throwing up my medication within an hour of taking it.  Thinking it a bit odd I went off to my doctor who sent me for blood tests.  The next day I was in hospital.  

I was taken off my leukaemia medication and pumped full of many other medications to try and encourage my liver to regenerate.  Livers are pretty special, they can recover and regenerate from some pretty hard abuse.  Unfortunately, my liver was too badly damaged and within a week the doctors started mentioning words like possible transplant, then definite transplant.  By this stage I was suffering pretty badly from encephalopathy, meaning the toxins my liver could no longer process were affecting my brain and I had gone a little crazy.  I don't remember much of this time and the last two days are pretty much gone but I remember my nurse coming in really early one morning, so excited because they had a liver for me.  I was excited too but I couldn't remember anyone's phone numbers to call and tell them, or how to drive my phone and find them.

I found out afterwards that the doctors had given me about two days to survive with my liver in the state it was in and that I would have most likely have been moved to ICU that day if I hadn't gotten the transplant.  That in itself should be the answer to why I decided to join the FilmLife Blogger Challenge.  I am So Lucky that a liver became available so quickly and So Grateful to my donor and their family for making it possible for me to have another chance at life.  The ultimate gift and one that I can never repay. 

If you were to donate your organs, which one would you love to donate, and why?(nb. this question is intentionally quirky so feel free to be creative and have some fun with it)

I don't know if anyone would want my organs now, presumably if I have leukaemia so do my organs?  I don't know enough about it but it's definitely something to ask the doctors.  But for the sake of quirkiness, let's just say that I can.

I would happily leave my lungs to Curlypops, they don't have a big capacity Cam but they are healthy (minus the leukaemia) and have never smoked a cigarette in their life! Other than than I would love to donate my retinas.  I love reading and could not imagine not being able to do that.  The gift of sight is precious.  And I'd also like to see my new liver go on to another home (if that is possible?) We in the crafty world are all about recycling and vintage and wouldn't it be lovely if my liver could save multiple lives?  The regifted gift that would be guaranteed to be loved at every new home. 

Who in your family would you need to talk to about organ donation, to be sure your loved ones knew your wishes?

My Dad is now a convert to organ donation.  He'd want to be wouldn't he?  Once I find out from my doctors if I still can donate, I'll need to let my Dad, Mum, sister and MR know.  I have no doubt they would all happily sign those forms if the need ever arose.

 
 
A Year of Good Things
15/366 ::For the world::
I added my piece to raise awareness about organ donation.

14/366 ::For my liver::
I baked it some three month birthday cupcakes
 
 
  
Excuse the poor photo quality.  Courtesy of my old iphone which seems more interested in background focus than foreground.  Good thing the thing in the background is so good looking!

Decisions, decisions...

Now that I am Oh-So-Close to finishing the pink granny blanket (I have woven in alllllll the ends (which took a lot less time than I thought it would) and done an edging but decided that I want the edging to be a bit wider so am going to do another couple of rounds before taking final photos) I am starting to think 'what next?' 

I haven't quite worked it out yet but I have narrowed it down to something from one of these books, two of which I received Christmas 2010 and the other Christmas 2011, and all of which I have not made a Single Thing From.  Dreadful!  The other components I have narrowed it down to are a) something which is quick and not too difficult and b) something which does not require much/anything to be purchased.

I know one thing... I am going to have fun deciding!
 
 
 

In other Very Good Thing news - we have bought a matching tall boy (second hand from gumtree, so excited to find a matching one listed!) for its brother in the bedroom so the unmatching old one is going to be shifted to the craft room for fabric and bits and pieces storage.  Craft room Order and Organisation, here I come!  Secondary Good Thing - new display space!  Yay! (The other tall boy in the bedroom has a TV and a playstation on it... very attractive display that)

13/366 ::For the craft room and MR's sanity::
A new set of drawers for the bedroom means an old set of drawers for the craft room.  Time to finally finish setting up the craft room and making it beautiful! (hence easing MR's mind at my insane levels of clutter)

12/366 ::For myself::
I've started to see a kinaeseologist in an attempt to work through my issues (along with the help of counsellors at the hospital) and get my body back in working order.  Fingers crossed
 

At my Grandad's

Today my Dad, sister and I went on a road trip down to Australind to visit my Grandad.  We took lunch down to have with him, roast turkey, salad and bread and butter custard.  I'm not all that close to my grandparents, haven't really ever been as we didn't live very close to them when we were young.  My Nan has passed away now though so Grandad is on his own.  He is really into ham radio and has a 'shack', his own bedroom turned into a completely covered with old radio parts, Radio Shack.  It's quite cute to hear him say, 'Oh, that's in the shack.'  I have to admit though, all he talked about other than his radios was computers with my sister, who is a bit more technologically minded than I am.  So I took a wander of the house, looking at things in quite a different way than to how I used to on the odd occasion that we would visit.  There are some top vintage pieces in there!  Here are some of my favourites, via instagram...

A cuckoo!! I had no idea they had it. 
It is on the wall in a room I never see him in, covered in dust and cobwebs and not wound up.  So sad!  

 

Beautifully crafted granny rug, looks so wonderful spread out on the bed! 
Grandad isn't sure if Granny or Nan made it or if they bought it.

Look at this gorgeous butter dish!  Hand painted in Norway, or Finland, I forget now - no good at remembering these details on the stamp on the bottom!

This little boy and girl set are very cute

 

Carousel horsey tin!  Adorable!

A Year of Good Things
10/366 ::For my Grandad::

I made him a nice big bread and butter custard, his favourite dessert.  And three bowls of leftovers for another day!

Good Things 9/366

::For myself::

I ate comfort food.  Vanilla cannoli.  Yum.

Find more Good Thing Do-ers here

  

  

Also, thank you to those who commented on my post yesterday.  All your reassurances were much appreciated.  In good news, while I do have to go back on medication for the leukaemia which has spiked from 2% to 16% in a month, I don't have to take the twice a day 3 hours of fasting ones.  Thank god for that.  Once a day tablets and no fasting.  Very relieved. 

One Word

  
I have been sub-consciously musing over Maxabella's One Word for 2012 idea for the last few days with nothing really coming to me.  Until today.  It just popped into my head.  This is what I need for 2012.

 

to thrive.

my health

my life

our relationship

our garden

our home

This is the year for growth and change, development and improvement, health and love.

Positivity will get you everywhere.

A Year of Good Things


8/366 ::For myself and for Bloggers::
Today has been another day of quiet.  Nap filled to (attempt to) restore energy.  Contemplative of 2012 goals and One Word as above.  Lots of blog reading.  Lots of commenting love.  Surely that is a Good Thing in itself?  Everybody loves comments. 

7/366 ::For some friends::
Yesterday I went to MR cousin's (L) housewarming party yesterday and I organised with MR's direct family (parents/brothers) to go in together to get a Good Present.  L had been talking about how she wanted a nice big frangipani tree to go out the front of their house but of course, a tree is a bit expensive for most people to purchase, including them.  Listening to what people talk about liking so you can get them awesome presents is a Good Thing.  So together we put in and got the biggest one I could find.  The tropical version with pink flowers of course!  It only just fit in my car on the front seat floor.  I had to peer through the leaves when I wanted to turn left!  It's looking a bit windswept here but that's what you get on a windy day!  Do you like my attempt at wrapping?  A cheery yellow (windswept) ribbon around the trunk.  Is it called a trunk when it's that small?  You can't really call it a stem or a stalk?

A Year of Good Things

  
As you may have noticed, I have joined in with Pip's endeavour to do A Year of Good Things.

And really, this post is just to rave on about how truly awesome it is!  I have been planning Good Things to do in my head and getting all excited about them.  I am Miss Do-Gooder-to-the-Max

Of course, I've always tried to do good things and be a nice person but some days I'm sure I would have missed due to be Major Crankypants or Miss Sookybum or just because I didn't leave the house.  Actively planning Good Things makes me feel happy so Crankypants and Sookybum me are minimised (always a good thing)

Today I did all sorts of awesome Good Things.  I couldn't just stop at one.  I did the one thing I had planned but then I just kept going.  I was paying my parking ticket at the hospital (again, I'm sure I should have an allocated bay with my name by now) and the lady next to me didn't have enough change for her ticket (hospital parking is ridiculously expensive) so I gave her $1.40.  And then on my way to the shops I was a Good and Nice Driver and let people in four times (they all thank-you-waved, people are learning)  And on my way home I let the windscreen washer at the traffic lights person do my windscreen.  He looked like he wasn't having a good day and seeing as I was after all the Good Things I thought why not help him out too.  Good Stuff is TOTES AWSE! (I feel so old typing that because I would so never say 'awse' aloud)

It's so nice to do Good Stuff without expecting anything in return.  Think of all the good karma going around Australia at the moment with people doing Good Things left, right and centre.  I will happily receive a dose of good karma in the form of settling in to my new Leukaemia medication easily and without too many side effects.  Fingers majorly crossed.  Apparently I might have to go back on it at the end of the month.  I was hoping for another month or two off it.  Stupid leukaemia medication.  I am quite anti it now, even though I know it will save my life, I am dubious because it tried to kill me once already.  So I am suspicious.  And wary.  And quite unenthused about it, even though it will be a different type to the one I was on that chewed up and spat out my liver.  My haemotologist appointment is on Monday so keep your fingers crossed for me as well!


A Year of Good Things

6/366 ::For myself::
I was lucky enough to win a $150 gift voucher for Rebel Sport from the lovely ladies at Alice Becomes just before Christmas and I spent it today on some motivating exercise stuff.  A Zumba package with hand weights, a fit ball and some exercise shorts and pants.  Getting fit here I come! (Just a bit slowly and Zumba might have to wait a few more weeks...)

Parent for a Day

  
Today I am looking after MR's nephew.  He is 5.  His family just flew in this morning after a red eye flight from a holiday over east and his parents are off to a wedding today so I get to hang with him.  At the moment he is napping.  I am ready for him to wake up because I want to play!  Although give it about an hour or two after he wakes up and I will probably be ready for it to be my turn to nap!  I have all sorts of fun options planned for him to choose from.  I've really missed hanging with kids.  All the more exciting that it is just one child.  So many crafts that you can't quite manage with more than one or two.  And I get to put a booster seat in the back of my car.  Excitement!  Ahh yes, one day Miss Clucky.

Hopefully, if I'm not too tired, I'll be back for a wrap up on the days events this evening once he's gone to bed.




A Year of Good Things

2/366 ::For my Dad and his charity:: I helped out with a sausage sizzle to raise money for the school he is building in Cambodia.

Dad was inspired almost 2 years ago now to start up his own charity building a school in remote Cambodia.  His charity Aus Assist Asian Development Fund is well underway in building a school in Soun Sah Village.  He is providing locals with jobs through the building of the school and once complete, many more children will have access to education who previously were unable to.  Dad goes over a few times a year to do stuff and my sister has been twice.  At the end of last year her and Dad took a group of boys from her school on a community camp over there to learn about the community, Cambodia (and how lucky they are going to a private boy's school in Australia) and to help out digging trenches and the like.  If you are looking for a charity to donate to this year, this is a truly worthy cause and while it is small fry compared to many, my Dad has put Many Many hours of work into making this happen.

 

The school well underway!