Taking Stock


Screen Shot 2014-05-25 at 12.54.46 pmI’m doing a course on blogging and writing (just in case you missed my many references to it).  I am loving the course and determined to do all the assignments, because you can take the girl out of girly-swot but you can’t take the swot out. Which just means (if you are not a kiwi) that I am a big fat nerd.

So here it is.  A list of what is happening in my world at the moment.  If you are a girly-swot too, who loves lists and wants one of your own, join in! I’d love to see your list, too!  I’ll add the empty list at the bottom of the post so you can copy and paste it.   Message it to me over on:
https://www.facebook.com/chronicillsofrach  or add it to the comments below.

Making: havoc of my kind

Cooking: lots of slow cooker, save-my-bacon meals for six.  But last night(!) an inspired-by-Rosie, pulled pork and noodle stiry fry with lots of fresh veggies and handfuls of coriander.   Oooooh… delish.  Even if I say so meself.

Drinking: tea!  Wanna cuppa?

Reading: Half The Sky, Let me Sing You Gentle Songs, the Dovekeepers…
(well, in truth, I’m just looking at them in my ‘to read’ pile and actually reading lots of blogs!)

Wanting: an ugg onesie.  Have they been invented yet?

Looking: at the ‘insides’ of lots of amazing heads in the blogosphere

Playing: over and over in my head,  a conversation I had recently with my doctor

Deciding: that expanding our family was the right thing to do after all

Wishing: I had enough energy for my expanded family all of the time

Enjoying: blogging with Pip and the Pipsters

Waiting: for the rugby to finish so hubster can join me in sweet slumber

Liking: (“blog crushing” on) Michelle from Living with Bob, Annette from I Give you the Verbs and Kellie van Meurs from To Russia with Hope.

Wondering: if Zed will be okay in his first TV audition next week

Loving: being challenged by my BLOG WITH PIP course!

Pondering: the sounds coming from down the road… is that joyous celebration or a fracas?

Considering: whether we should investigate that...

Watching: BBCs ‘Hunderby’… crying myself silly with laughter. It’s a spoof period drama/ comedy.  Think Jane Austen, crossed with The Young Ones.

Hoping: I will wake up in time tomorrow to wake Bee for her sunrise photography session with the other Be.

Marvelling: at the wondrous coincidences that occur in my life, all the time.  You too?

Needing: some oomph.

Smelling: Lemons from the Chilean Pisco Sours Hubster made tonight.

Wearing: Lazy Bones PJs (Australian genius in a pajama)

Following: suit.

Noticing: that my blog is a bit different to what I thought it would be. Less informative so far, more impressionistic.  What do you want more of?

Knowing: I am so lucky to have this beautiful big blended family.

Thinking: how I have always been happiest in International communities and that is why I love social media

Feeling: happy tired instead of sick tired.

Admiring: the character Bee showed at riding today when she pushed through her terror and made the jumps that she thought she couldn’t get over.

Sorting: our finances.  I’m in charge of them for the first time ever!  eeeeeek!

Buying: Star Coins for StarStable (I know.  Ridiculous.  And I am in charge of finances?  Help.)

Getting: closer to happy more often.

Disliking: NZ being so small and at the bottom of the world, so far from some of the best Dysautonomia specialists.

Opening: the doors to the things I have needed to express for a long time.

Giggling: at Hunderby’s naughty bits.

Feeling: affirmed and supported and loved by people I know and by people I haven’t even met in person. It astounding how good that feels.  I have a community.

Snacking: I’m not!  Gold star for me for the last five minutes of no snacking.  But just by the by, ‘snackage’ is quite possibly one of the loveliest types of eating. Closely followed by dessert spoon lingering.

Coveting: The writing lives of Naomi Bulger, from ‘Naomi Loves’ and Pia, from ‘Woven Words’.

Wishing: I had a magic wand.  There are lots of places I would wave that thing.

Helping: with my words. People are finding my words useful and I really love that.

Apologising: for not making links yet for all the lovely people and blogs mentioned above. That’s a bit beyond me this second. I will amend that on the morrow (check back here and get clicking)!

Hearing: a song on a loop in my head:
“Every little thing is gonna be alright” (after a little meme glued it in there).

Here’s the list.  Your turn!
Making :
Cooking :
Drinking :
Reading:
Wanting:
Looking:
Playing:
Deciding:
Wishing:
Enjoying:
Waiting:
Liking:
Wondering:
Loving:
Pondering:
Considering:
Watching:
Hoping:
Marvelling:
Needing:
Smelling:
Wearing:
Following:
Noticing:
Knowing:
Thinking:
Feeling:
Admiring:
Sorting:
Buying:
Getting:
Bookmarking:
Disliking:
Opening:
Giggling:
Feeling:
Snacking:
Coveting:
Wishing:
Helping:
Hearing:

Top 10 Dysautonomia Links

I’ve been sick for a long time.  Back when it all got bad I didn’t think illness would last this long;  any information I found, I read and absorbed, talked about with my hubster or forwarded to my doctors.  I certainly didn’t save the links or think I’d be collecting them.  So, because this blog is a resource as well as a record, I am going to go through and find and rate the top ten links I’ve been looking at lately.
Do any of them relate to you too?
I’d love your comments or suggestions for adding to this page of links, all recommendations welcome.

Screen Shot 2014-05-31 at 3.50.17 pmThis blog…
Michelle is the literary mama of the Dysautonomia communities in Australia and New Zealand.  This weekend, she is presenting at the Emerging Writers Festival in Melbourne.  She is loved by all for her humour and her intellect.  As a neuropsychologist, her scientific approach and her hilarious and heart rending explorations into the realities of Dysautonomia make her blog a ‘Go To’ resource for so many of us:
http://bobisdysautonomia.blogspot.co.nz/

This video…
about treatable forms of Dysautonomia.  Still my source of hope.  Recorded during the Syncope and Dysautonomia Symposium in the USA, 2011.
Dr Steve Vernino, Associate Professor of Neurology
UT South Western Medical Center, Dallas
https://vimeo.com/32792885

This PDF for clinicians…
From the Mayo Clinic. A flow chart providing information about the testing algorithm for autoimmune dysautonomia:
http://www.mayomedicallaboratories.com/media/articles/algorithms/adysautonomia.pdf

This website…
caters to the information needs of Patients and Doctors.  It is well organised and easy to use. It was founded by Lauren Stiles, a big mover and shaker in the Dysautonomia community in the States.  I love her passion to help people find answers, even after she has already found her own:
http://www.dysautonomiainternational.org/page.php?ID=125

This overview…
of Autonomic Disorders of the Neuromuscular variety. From the Neuromuscular Disease Centre, Washington University  USA
http://neuromuscular.wustl.edu/autonomic.html

This update…
over on Dysautonomia International about promising research into the condition Postural Orthostatic Tachycardia Syndrome.  Research in the area of Autonomic Dysfunction is not as prevalent as the more frequently diagnosed conditions in the world of medicine.  This latest study is giving POTS patients new hope!   New Evidence of Auto-immunity in POTS:
http://www.dysautonomiainternational.org/blog/wordpress/new-evidence-of-autoimmunity-in-pots/

This organisation…
Dinet and Dynakids were one of the original Dysautonomia information portals and patient forums.  There is much good information to be found here. They are US based but have an international following:
http://www.dinet.org

This video about POTS…
was the first time I saw doctors and patients interviewed about what it is like, the aetiologies and symptoms of Postural Orthostatic Tachycardia Syndrome.  Still has many useful and relevant sections and is helpful for family and friends who don’t understand what and why POTS patients feel, living with POTS:
http://m.youtube.com/watch?v=8UPMYNkm6Bc

This article…
about management of patients with dysautonomia who need a general anaesthetic for surgery:
http://www.anaesthetist.com/anaes/patient/ans.htm

This Summary…
of Autonomic Testing.
http://www.touchneurology.com/…/…/articles/9076/pdf/hilz.pdf

 

Horse Sense

Todays post is dedicated to Natalya.  A beautiful person, a stunning dressage rider, horsewoman and an excellent coach.  Once, one of the mothers at Saturday riding said that horses were stupid creatures.
“No,” said Natalya, “They’re actually incredibly sensitive” and I loved her even more.

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When I was about 14, life in Lae, where I grew up was getting a bit scary.  There were more and more violent attacks against women; the stories of rape and murder too close to home. That was part of the scenery in that beautiful place.  Violence, unrest.  Contrast, corruptions; trouble in paradise. There were riots and curfews, the township windows were all boarded up.  We had a security guard and a razor wire fence.  Expats were leaving in droves.  
Among them were our friends who had recently moved back to Melbourne. Their kids were all at the same school there.  The school also took co-ed boarders; a happy coincidence.  See, our older siblings were already through their schooling, but Brett and I weren’t.  I had plans.

It was decided that my brother and I would go to that school in Melbourne, as boarders.  It was 3448km away.  But I don’t want to give you the wrong idea. It’s not like Mum and Dad exactly planned for that.  Perhaps I had read altogether too many “In a Pickle at Mallory Towers” style books, but  I was convinced that boarding school would be smashing fun!  All pillow fights and jolly good lacrosse games.  I pictured myself resplendent in serge tunic, opening care packages from home and sharing out toffees. I would be the new girl everyone wanted to be friends with and my new uniform would make me look magically slender and effortlessly attractive.  All the boys would be nice.  And one of them would fall in love with me, pledge to marry me and we’d eventually move to a big house in the country. 

So I got my friend’s mum to send the prospectus to my folks. I had already tried and failed in my bid to go to another Australian boarding schools for girls.  What made this plan so perfect was that my brother could come too, Mum and Dad were sure to go for that! I possibly wheedled and nagged for a few solid months. I may even have filled in the forms and got their signatures under duress.  Cracking effort really.  I got my way. And away we went.

Melbourne was about as different to Papua New Guinea as you could get.  There was no security fence around the boarding house.  There was only one lock on the door.  No dead bolt, no security guard.  We were allowed to walk to the shops.  We caught trains and buses.  We went into Croydon for hot chips (and sneaky cigarettes).  There was an enormous amount of freedom.  At first I found that really hard, I felt insecure in the truest sense of the word.  My homesickness was a shock to me.  Mallory Towers was a crock. My new school was actually excellent, the other boarders and house mistresses were (mostly) lovely… but it just wasn’t what I had dreamed up in my Enid Blyton imaginations.

Down at the bottom of the school, beyond the sports field, there was a paddock.  It’s all built up and developed now, but back then, there it was. I would wander,  cold and displaced, down to the bottom field after school finished for the day.  The other girls would be whacking a ball around the tennis courts, or chatting, or doing homework, or watching RAGE.  I’d grab an apple and head down there, away from everyone. Toward solace. I had a secret friend down there.  A big bay horse with giant molten black eyes.  I called him Licorice.  Mostly for those delicious eyes. He’d see me coming and trot over to the fence, whinnying a greeting across the field.  He wanted my apple, but I felt like he wanted to see me.  To wuffle his warm whiskery breath into my palm and push against me with his heavy head.  I’d talk to him; all about it.  About all of the strangeness I was finding.  About my little lost self.  About missing my home.  About how I made a mistake pushing them to send me away. He’d listen and nudge me, knowing.  Sometimes, he’d rest his head over my shoulder.  I loved that horse.  He was only there for a few weeks.  Or maybe it was that I only needed him for a few weeks; I remember going to see him and he was gone.
And it was strangely, okay.  I’d found my way.

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I walk into the stable yard of my daughter’s riding school, and take in a big deep, satisfied breath.  Horses smell of warmth and hay, of dust and the sunshine. I am pushing myself this morning.  But it is worth it.  My girl has such a passion for horses, they are her everything. Her face is transformed, completely absorbed already; fingers wrapped in mane, face against warm neck.  We’ve just arrived and she is home, right there in the loose box, lost in the love of a horse that will never be hers.  My stomach lurches and I struggle to stand upright, I look for a spot to lean.  And I see him, the horse in the neighbouring pen.  He’s new to the riding school, there on trial.  He bends his beautiful head down toward my tummy, pushing gently against me. Hello, I croon.  You are new here They’re nice you know, they’ll look after you, Beautiful Boy.  He keeps wuffling against my tummy.  Blowing warm breath into my jumper. 

DSC_2469

He looks directly into my eyes.  I know, he thinks in my direction.  It hurts.  And there I am, back there with my Boarding School bay. I reach up and stroke the soft spot under his forelock.  Thank you, I think back.  The ‘knowing’ is the same gift I received in that paddock, twenty five years ago. But the pains are different, then and now.

Then, the pain of regret, the loneliness of a child-woman.
Now, the pain of illness, the knowing of a woman-child.
And here, this horse, this beautiful, clever horse.
Where did I put that apple?

10404868_10152517466505815_1086285874588052835_n10379022_10152517466515815_2886332440220047177_n

 

The first photo in this piece is by Be Couper.  The one above of me was taken by my daughter Bee last weekend.  I took the one of her; we’re with Trina.  She is not the horse I mention here, but is also totally divine.  Thank you Evie for letting us smooch with her and go all papparazzi.  The picture of Bee was taken by me. 

Grief Music

Talking is good.  I can talk! But writing gives better shape to my words.  Let’s them step out in ordered lines, marching to the beat of the same drum. Rhythm, cadence, innuendo, pace.  Often, my writing comes when my music is playing.

When it comes to music itself, I prefer to listen to others, rather than make my own. The music I make sounds better in written words.  You can trust me on that one.
Or ask my hubster about my ukulele concerts.

———————————–

Music is solace, medicine and healing for the troubles in my heart.  I listen to escape, reminisce, to motivate myself or to find a way to let out some tears.  For me, both music and movies are effective cry-button-pushers.  Sometimes, you just need to have a good cry.

I heard a song, once, directly about grief for a lost mother.  I think it was called ‘Goodbye’s The Hardest Word’. It was playing on the car radio and it lasered right in on my softest spot.  I was overwhelmed. I pulled over and let the crying overcome me…
It was a few years after my Mum had died,  and it was Celine DionBut even the number of years that had passed and my personal music taste barriers didn’t stop the grief.  When it comes, it comes on strong.  We call them SUGs around here.  Sudden Upsurges of Grief.  Sometimes they don’t even require a song.  I’ll be busy getting about the business of my day and WHOOMPH.  SUG.  Sock it straight to the heart.

Mumma!  Where are you?!

I am all at once, a child again, lost in the crowd. Seized with terror.
Where’s my Mum?

She’s gone.


Her name was Faith.  She passed that name to me, and I to my girl.  I love that link between the three of us.  It’s forever.  It’s longer than life.  One day, someone will be researching a family history and there we’ll be.   Three steps down, faith on the family tree.

Screen Shot 2014-05-27 at 9.54.23 am

She was beautiful.  Hard case.  Shy. Loving and controlling and supportive and wise.  And mine.  She got ovarian cancer and fought for seven years.  I became her friend in those seven years.  And a grown up.  And a mother myself.  We spent hours together, working on her memory books.  She read endless stories to my wee girl, far beyond the patience of a parent. She was a special Granny.  They were mates.

“We’s mates, ay?” she’d say to Bee in a funny voice, eyes twinkly over her glasses.  Bee loved her with ferocity.  She was two when Mum died.  Even now she still wakes sometimes, crying in the night, deep in the clasp of her own SUG.  She misses her Granny.
Zed never got to meet her.

I find myself sounding like my Mum, sometimes.  A turn of phrase, a sharp repast when I’m stretched thin. A quirky saying or a loving squeezy ‘mmmmph’.  I mother like her; on my good days. And somehow, I always know what she would say about any given thing.  Usually the opposite to what I would want to hear but almost always, truth.  I know if she was here, she’d be over, fluffing about and helping me.  I know she’d be bringing me articles about how I can get fixed and staging sneaky prayer fests. She’d be loving me the way only a mother can.

 

mumandme

So, today, I want to post a little song on here.  It’s quite possibly my favourite ‘farewell’ song.  I love it very much.  The Indigo Girls have caught, by some musical magic and lyrical gift, the pain and beauty that co-exist in real human relationships.  The imperfect, perfect love between two people.

When someone you love dies, you don’t say farewell once.  You say it every day.
It takes a lifetime to comes to term with the idea that life ends.  Maybe we never ever do.  So here’s to Mum.  Faith.  Beautiful soul and beloved mumma.

And here’s to you; to your grief, for your love.
For all those lost to us that we love.
I hope this song brings you solace, medicine, and healing for the troubles in your heart.


Okay, so the hair might be a tad distracting.  Stop looking.  Close your eyes and listen to that voice.  Wow, just wow.

How to Just Be

 

Every now and then, I’m going to post some photographic magic here.

Photos by the crazy talented Be Couper.   A little window into Be’s world.
These posts will be called, ‘How to Just Be’.  Their purpose is to give you something to pause and wonder over.  Something beautiful.  Something to inspire you to take a deep breath. A moment to drink in the view, even if you can’t get out to see these wonders.  Something to help you to just ‘Be’ in the moment.   This one I have called Yellow Skies.  Don’t we live in a gorgeous country, down here at the bottom of the planet?  Thank you for sharing your art with us Be.  You clever lady!

Photography:  Be CouperBe Couper Yellow Skies

A Medical Menagerie

 

This may be of interest to you if you also have Dysautonomia, Pandysautonomia or Seronegative Autoimmune Autonomic Ganglionopathy, or if you know someone who does.  If neither of those apply, please don’t feel obliged to read through.
I record below all of my medical weirdnesses because I know that people will find recognition here. I took a lot of comfort from learning that there were others like me when I first heard my diagnosis.  I have recorded all my symptoms because sometimes, something small can be a clue.  I am looking for answers and you might be too.

nb_-i-keep-this-list-here-for-others-looking-into-their-own-condition-i-am-now-well-but-what-you-see-below-is-how-things-were-for-me-before-i-went-into-remission

 

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Symptoms From Top to Toe:

Screen Shot 2014-05-26 at 4.32.54 pm‘Cognitive Fog’; memory issues, variable ability to concentrate, dizziness.
 These challenge my very identity.  I was smart and now thinking is much harder for me. Sometimes I sound like I’ve lost my marbles, my words get jumbled and my memory scrambled.  It’s distressing.  If I sound weird when I talk to you, it’s not that I am stupid.  I am just struggling.

Screen Shot 2014-05-26 at 4.32.54 pmI have trouble with vision sometimes, my eyes go into focal spasm.  My pupils are not always equal in size and sometimes they don’t adjust to the light properly.  My eyes are often dry.  Other times they stream and people think I am crying.  But it’s just my Dysautonomia (as moved as I am by whatever it was you just said)!

Screen Shot 2014-05-26 at 4.32.54 pmDizziness when I have a postural change has been my reality since I was eight. Sometimes I am dizzy even lying in bed and it feels like someone is slowly tilting my bed backwards in a full circle. It feels a bit like being in a raft on the ocean and I feel like I am going to fall off. Or I have a kind of up-and-down dizziness when I am just standing (like I’m bouncing internally), or presyncope when I bend over, or stand from squatting. My dizziness makes me feel unsteady on my feet and I bang into walls and doorframes. I always have to steady myself against something if I have to stand. I use a ‘shooting stick’ cane that has a seat so that if I need to sit quickly, I can. I can also use it to prop myself up.  Descending stairs is terrifying. Dizziness is never something you get used to. You learn to breathe through it, but your body always feels stressed during a dizzy episode.

Screen Shot 2014-05-26 at 4.32.54 pmThe inside of my mouth feels like after you’ve taken a big mouthful of hot soup.  That burnt tongue feeling? It is sometimes tender, dry and my gums are red and sore.

Screen Shot 2014-05-26 at 4.32.54 pmHeart issues are part of my scenery, managed mostly by my wonderful pacemaker.  I don’t take cardiac medicines anymore.  My heart rate ranges from the early thirties to the mid two hundreds. If my heart rate drops rapidly, my pacemaker kicks in.  I have had thousands of rate drop episodes since my pacemaker was inserted. I am grateful for it every day. My blood pressure can be very low, or very high, or somewhere in between.

Screen Shot 2014-05-26 at 4.32.54 pmMy stomach, digestive tract and bowel can miss important nerve messages that make them work.  This can result in a ‘pseudo obstruction’.  First, I get ‘post prandial bloating’; my tummy distends like a ten-month pregnancy.  Then, all tummy services are suspended  (so much for never having to be pregnant again)!  These days I wear forgiving clothes and I frequently get asked if I am expecting. When it is extremely bad, I make the trudge back in to hospital. It’s hideous; but my new normal is a bowel that doesn’t work without extreme inducement. I take ten various doses of laxative a day and also self administer enemas.  I hate this symptom most of all.

Screen Shot 2014-05-26 at 4.32.54 pmI am nauseous on and off all day and especially at night.  This is a side-effect of the medications which  produce peristalsis (intestinal squeezing).

Screen Shot 2014-05-26 at 4.32.54 pmMy bladder either retains urine and have to self-catheterise, or I am incontinent.  I have detrusor dysfunction, so emptying my bladder fully is tricky. Sometimes for brief and lovely periods, the pendulum passes through the middle of the arc and my bladder behaves like it used to.

Screen Shot 2014-05-26 at 4.32.54 pmMy body doesn’t regulate temperature properly.  Some parts of my body can’t sweat anymore, so other parts of my body overcompensate.  I struggle greatly with heat.  I don’t know how to dress for the conditions because my experience of them is not accurate.  In the past, I often over-dressed or under-dressed my children.  Now they are old enough to let me know if they need thermals and a jacket.  For me, it is always layers so I can try to manually adjust things from the outside in.

Screen Shot 2014-05-26 at 4.32.54 pmI get fasiculations in my muscles, in random places all over my body, sometimes these go on for a long time, other times it is just for minutes.  Sometimes, they are not there at all.

Screen Shot 2014-05-26 at 4.32.54 pmMy leg muscles are weak, so standing up from a seated position is hard.  I struggle going up and down stairs or uphill.  My left leg often burns.  I’ve been told this is nerve pain.  Sometimes I have a strange gait, it is tricky at these times to lift my feet properly.

Screen Shot 2014-05-26 at 4.32.54 pmI have pins and needles and burning sensations in my feet and hands, known as peripheral neuropathy.  We found an excellent medication for this, but now I only take it when it is extreme because the medication made my brain fuzzier.

Screen Shot 2014-05-26 at 4.32.54 pmI live with fatigue. It stands to reason that my body is tired.

 

Medications and Treatment (pre-Immune Suppression)

The general approach with Dysautonomias, is to treat the symptoms. So for everything you see above, there is something I take or do to try and help it.

 

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  1. I take Mestinon, Domperidone and Cyclizine 4x day.
  2. I take Solificenate Succinate, Gabapentin and (a list too long to be bothered recording) of laxatives on an as-needs basis.
  3. I use intermittent self-catheterisation and enemas as necessary.
  4. I also have, and highly rate, osteopathy (thank you Glyn, you are a genius!)
  5. I have iron infusions when my iron gets too low from malabsorption (these are also genius).
  6. I am currently seeing some immunologists who think it is probable that I have sero-negative Auto-immune Autonomic Ganglionopathy.  Pulse IV steroids point to an auto-immune aetiology, so moving forward I may trial other immune modulation therapies.

I rely on my husband, my kids and my friends for help, encouragement and support.  I don’t like to ask, I don’t like to receive, but I am learning how.

Still with me?  You are amazing!  Thanks for sticking around!

“This Happy Thing…”

A friend just posted this on facebook.
This does for me what Pharrell Williams does for the rest of civilisation.  Swing on happy people!

I’d love to be able to do this!


Source:

I CHARLESTON NASHVILLE (Music City U.S.A.)

His Heart

Screen Shot 2014-05-24 at 8.49.11 amHe’s got a good heart, my man.

So when that kooky clairvoyant told me he had a heart problem.  I smiled, smugly safe. Nah, it’s me with the wonky heart, not him.  But within weeks of that odd meeting; he was rushed into hospital for what we thought was pneumonia.  He could barely breathe, was grey and covered in a sheen of cold sweat.  I knew something was very wrong, because when I sternly suggested a trip to the doctor, he swore at me.  My hubster swears at the rugby ref.  But not at me!  We went, pronto.  Straight into resus at the local clinic.  A clever nurse looked at his heart trace and called the ambulance.  My man was in trouble.

It turns out, he had a bicuspid aortic valve and needed a new one.  It was shocking, terrifying and life changing.  We waited while he rested and they pumped him full of medications to reduce the size of his heart.  It had been under so much pressure from the faulty valve and regurgitation, for so long, that it was massive.

I always knew he had a big heart.

Bit scary though, when it is too big to operate on.  We waited and then, six weeks after diagnosis, they decided they couldn’t wait longer, they’d push on.  He underwent rib cage-cranking, chest opening, spare part surgery and came out with a brand new synthetic valve.  Click.  Click. Click.  I can hear it, if I concentrate on it.  The ticky clicking of his new valve is a familiar and comforting sound now.  So familiar we barely notice it anymore.

He’s got a strong heart.

Every year, they check on the progress of his heart.  Measure to see if it is coming down in size; it takes a while apparently.  Years.  Sometimes, they can get larger and the med regime changes in the wrong direction.  See, when it comes to betablockers, more is less.  The more you take the less energy you have.  The harder it is for your heart to respond organically to exertion.  There’s a knock on for everything.  But on it ticks.  Click.  Click.  Click.  Slowly, calmly.  It’s okay, heart.  You’re okay, just chill.  Keep it all on the level.

It’s a steady heart.

Sometimes at night, I lie there listening to his beautiful heart.  When they did his heart op, the nurse said that people post heart surgery are often quite emotional.  It’s a normal part of cardiology she said: emotion.  Makes me think there is something more to the mythology and imagery around hearts.  Why do we equate the heart with love?  There must be more to the heart’s connection to love than meets the eye.  And that makes me think that it is small wonder his heart is so big.

He carries so much in that heart.

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My hubster is the best of men.  He works so hard.  He shows us, all of us, in our big menagerie of a family, how much he cares by how he soldiers on.  He provides for us, so well.  In spite of all the hurdles and the hot mess our mutual health states are in. And as well as the pressures of a big job, he builds beautiful furniture, fixes stuff, works on miniature stables with our daughter, karate practise and lego with our son. He looks after me, he becomes a mum in my place when I can’t be here.  He’s a good hubster, a good dad; that man.  Solid, dependable and loving.  A strong and funny guy.  I laugh with him, and it makes so many things a joy.  Things I never thought could be funny. We are friends.

Sometimes he even does the washing!

See?  He’s got a generous heart.

We went for his regular cardiac ultrasound check up today.  It was a bit of a carnival atmosphere, at least in our little corner.  A familiar sonographer (the lovely James from Yorkshire).  A familiar waiting room.  We’re frequent fliers.  We enjoyed the chance to be there together, just us.  And James. Actual dates are a bit few and far between these days.  we were holding hands like teenagers.  Squee!  He even let me take some photos for your edification.

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Here he is, with the lovely James.  They got a bit snuggly, out of necessity.  James did a bit of geo-phys on my man’s Time Team terrain.  Cute conversations about radiology stuff (hubster used to work in Radiology).  Cute bum.  (Hubster’s, ‘cause James didn’t have one).

It was so good to be there today and reflect on what a ride the last three years have been.  We’re compatible in quite a few ways, us two.  And all those years ago at the Desperate and Dateless ball, our very hearts were reaching out to each other.  Tickety boom.  I’m a bit broken, like you.  Wanna fall in love?

He has my heart and I have his.  It’s a nice mutual arrangement, that one.

Here are the Lumineers, singing about it. Finding and choosing my man.
I belong with you, you belong with me, you’re my sweet heart.

Newsflash

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I used to watch the news, but now, not so often. When did that change?  
I used to know who was at war with who and what kinds of horrors people were inflicting on each other each day.  Now I find the news is on when I am struggling to get dinner on the table.  It’s the absolute worst time of night to take anything in; the kids are clamouring at the counter, sometimes they are needing school letters signed or doing their last minute homework.  Our family is large and at that time of night there are five or six of us in the dining room. Sometimes, if the homework is done, I’ll try to be a broader citizen. I put the news on and turn the sound up.  The chaos and cacophony reaches crescendo.  I turn it off.  I should probably record it and watch it after the kids’ bed time.  But after bed time is so deliciously quiet and zen… (who am I kidding!  ‘I just need some water!’/  ‘I’m going to the toilet!’/  ‘Just one. more. cuddle!’  The latter always works ‘cause I am a sucker).  What I mean is, after they go to bed, it is my time.  My time with my hubster; if he’s not working.  My time to let go of all the day, disengage and coast.  I don’t want to see the torment of the world out there or carry the pain of those children or shake my head at the follies of youth or tut about some new journalistic low.  I don’t want to think at that time of night.  I need to chill out.
I deserve it.

Or, I’m baking and the choc drops are calling my name.  I pop a few in my mouth.  Why not?  It’s me making all the bakey effort, and I hate baking.  I’m not even going to eat most of these cookies.  I slave and they get wolfed down in a day!  Humph.  Gone in a flurry of after school famish.  All my efforts.  A few choc drops is the least I should have, really.  Should be the whole leftover portion.  After all, I deserve it. Then, it’s 2.45pm and I need to get my skates on for the school run.  A coffee, yes, a coffee might be nice… maybe there is time to call in at the cafe on my way out?  I’m ordering and I spy that gluten free raspberry friand, so far superior to my humble mum creations, beginning to bounce up and down in the display cabinet.  “Hey, Rach!  You’ve had a hard day’s morning!  Eat me!  I will solve all your concerns.  I will soothe all your achey woes.  Eat me!”  And I make friends with that little friand. It would be rude not to, and after all.
I deserve it.

Or, I’ve been in bed most of a week, conserving my energy for the bare minimum.  It’s been miserable.  I feel like a little pick-me-up. So I have a little guilty look over on the Book Depository website, again.  Just window shopping. I believe I should support local sellers, really.  I know I’ve spent more than enough on books in the last wee while, but something new to read?  Why not?  I have to put up with this stupid illness day after diabolical day.  Most of the time I keep the whinges inside my own head.  It bites.  I add books to my cart.  Just a way of grouping my favourites together, I tell myself. Like a neat little pile. I see a new audiobook that would be great for the kids.  I can justify that one easily.  In fact, they need it.  Good for their learning.  I click through to the confirm order page.  I ignore the total and tick the boxes. What?!
I deserve it.

kidwithtyre

Where I grew up poverty was a smell.  A rancid odour of uncleanliness. A reality you couldn’t ignore.  It slapped you in the face and demanded action, notice, emotion.  We lived in a third world country and down on the riverbanks behind our home was a squatter settlement.  The most common sound I heard from that settlement during the daytime was the sound of children laughing, splashing in the river, jumping off the bridge.  A toy worthy of envy was a tyre, toted alongside by a stick, wheeled beside its’ proud owner; belly pushing against skin, malnourished.  Dull eyes and scabby skin. Clothes worn into a polished brown sheen of dirt.  Singing.  Walking.  Feet hardened and yellowed and soles cracked. A wide, woolly headed smile that could crack open the hardest heart.

I think about those kids and I am reminded. We are born fortunate.  We arrive here, our lungs swell and we shout for attention.  We take for granted the care we get.  Food, warmth, love.  We grow in our warm cocoons, surrounded with the comforts of modern life.  Water from the taps, light from the switch, rest from the bed, free education, help from the doctor, subsidies, special programmes, trade agreements, interest rates, infrastructure, welfare.
After all, we deserve it, don’t we?

We don’t deserve anything.
Our rights are not in fact, ours by right.
Nature can give and nature can take.  Circumstances destroy. All we think we own and know to be ours can be gone in an instant. It happens all the time.
But don’t take it from me, you can see it on the News.

I don’t deserve the fruits of my labour or the benefaction of the garden.  I don’t have a claim to this beautiful free country, clean air, real food.  It’s not mine by right, this home, these people I love.  I am splendiferously fortunate. I could have been born into the squatter settlement behind my childhood house.  I could have contracted an illness far worse than my own.  I could have been childless.  I could have been alone.  I could, like millions of women and girls, have been sold into slavery. I am a whisper of fate away from another set of circumstances at any given moment.  I don’t deserve it; all that I have.  But I accept it.

And when I remember to think about how undeserving I am, I am grateful.

 

 

 

picture credits TV3 NZ and  nationalgeographic.org

view an incredible TED talk that made me think.

A little Podcast