A little mantra I read today:

Don’t forget you’re human, its okay to have a meltdown, just don’t unpack there and live.  Cry it out and the refocus on where you are headed.

So I think I’ve cried it out now I need to refocus.  I feel as though I’ve gotten off to a good start this year.  I’m back at work doing full days.  That was my first goal.  My brain seems to be functioning a lot better than it did at the end of last year.  I feel crisp again in my thoughts and I can finally connect the dots again in work situations.

But now I need a purpose.  How can I translate this knee buckling experience into something good?  I have this out there goal that I want to save others from going through what I’m going through.  I don’t want to focus on care I want to focus on prevention.  So where is that?  Why didn’t I know about looking after my kidneys?  Is it with kids?  Is it with parents?  Or both?

I think I’ve got some homework to do….

Being positive doesn’t mean you don’t ever have negative thoughts.

It just means you don’t let those thoughts control your life.

Today I had a very interesting conversation in which a scenario was presented:

Imagine your village or home town has been wiped out by some unexpected natural disaster.  Everything has been lost. Not human life, material possessions.  Houses, cars, furniture, clothes etc.

Following on from such a disaster it has been proven that there are two types of people:

Fifty percent of people are totally devastated as they have nothing.  They need to start again from scratch and just can’t believe that this happened to them and that they have lost everything.

The other fifty percent of people are also totally devastated but are  happy to be alive and see this as an opportunity to start again from scratch.  Everything they lost was just material.

Which one of the two groups do you fall into?

Apparently a study has been done in these type of situations and looked at how the two groups go about re-forming and how their thinking impacts them.

I kept thinking about this scenario all afternoon.  And what I realized is that this applies to anything in life.  Yes this scenario is quite extreme, the losing of an entire village.  However, the principles of the story can relate to many things that we are faced with in life.  It is basically another is your glass half full or half empty scenario.

In my case I didn’t lose my village but I lost the functions of my kidneys.  My organs have been wiped out by a natural disaster.  So do I take a poor me, I’m a victim mentality or do I celebrate the fact that I am lucky to be alive and do whatever it takes to stay alive?

There are moments, I won’t lie, when I do feel a bit sorry for myself.  For a couple of months I was in quite a dark place trying to get my head around what organ failure means to me, and how I was going to live my life with such an illness.  I believe I have climbed my way out of that dark place however I still allow myself moments of grief and a cry when it all gets a bit too hard.  I can’t put a mask on everyday and be smiley happy.

But overall I believe I have chosen the path of life and am willing to do whatever it takes to live.  I will have surgery to make a super artery.  I will inject myself with bone marrow making potion.  I will take pills and do regular tests.  I will eventually live on a machine until the miracle days arrives when I have been lucky enough to receive a kidney.

I recognize that this could have been worse.  I could be dead.  But I am not.  And I know I need to embrace this second chance at life and do something wonderful.  I know I need to be happy and live a full life.

I am trying everyday to be a glass half full type of person.  Every now and then I might spill a drop and be a bit down.  But these days I am not down for long.

If my village was wiped out, I would miss all the nice things that I worked really hard for and all the photos and memorabilia that reminded me of special moments.  But I would be thankful that myself and my family were still alive and we get to rebuild a new life for ourselves.  It wouldn’t be easy.  But as I get older I am coming more to the realization that life is just an endless path of situations that we need to work through to keep moving on our journey.  They may be big or they may be small situations but it is all about how we go about dealing with these situations that makes us who we are.

Sleep where are you?

I’m exhausted.

My body craves the stillness.

I can’t stop my legs, I can’t stop the restlessness.

Oh sleep please overcome me.

Sleep I need you…..

OPTION 1:  Take one day at a time and live how I am, without dialysis and stretching my 2% kidney function as far as I can.

Upside:  I’m not living on a machine, all I need to do is swallow my meds and do my injections – no dialysis which means I’m not spending two to three days of my week in hospital.

Downside:  Living with my symptoms.  I hurt, I’m tired and the cramps are mind blowing horrible.  There is also no guarantee of how long my 2% will last so am I just putting off the inevitable that I will end up on dialysis and living on a machine anyway.

The biggest downside is that I can’t go on the transplant waiting list until I’m doing dialysis.  So by staying off dialysis I have no chance of a transplant.

OPTION 2:  Go back on dialysis.

Upside:  My worse symptoms of pain and cramps would be reduced.  The biggest upside is that I can go on the transplant waiting list.

Downside:  I will spend two to three days a week in hospital.  Being on dialysis means I’ll have two pen-sized needles into my arm each session, with sessions lasting up to six hours each time.  Traveling will be very difficult and there is no guarantee of getting a transplant.  Currently there is a 4.5 year wait for a kidney in Australia.

I’m living option 1 now.  Is it right?  Am I just pushing my body out of fear?  Fear of needles.  Fear of living on a machine.  Fear of spending days a week surrounded by illness and grief.

Am I living in denial and trying to hide from the inevitable?

When the pain killers become just pills to swallow;

When the heat packs do nothing but burn;

When the rubbing and stretching are unable to release;

When there is nothing left to try and everything is a fail;

There is only one thing left to do.

Go and stay with Mum and eat her very special lasagna.

Thanks Mum, you’re the best and you always know when I need something to pick me up. I’m so glad you’re here.

All the positive thinking…

All the “love thyself” quotes…..

All the “I am strong hear me roar” statements….

Can’t beat down reality.

I can try and fool myself that I don’t hurt.

I can try and fool myself that my feet aren’t cramping and I can barely walk.

I can try and fool myself that my back pain is gone and it is ok to take pain killers just to get out of bed.

I can try and fool myself that I am not so tired I could sleep standing up in an elevator.

I can try and fool myself and beat down reality.  But the truth is reality will always come back and slap me in the face.

Today I have received a cold hard dose of reality….

This is the year I will be stronger, braver, kinder and unstoppable.

This year I will be fierce.

Hard love.

“Fee, you need to get use to this.  Kidney failure isn’t just for Christmas.  You can’t cringe every time we come near you with a needle.”

I am quickly learning that my care isn’t going to be delivered with kid gloves or lollipops.  It is usually delivered with brut force and a side serving of harden up princess.

Their view is that  I need to get use to all the tests.  I need to get use to all the needles.  Because that is my life now.  There is no escaping the stabbing and the poking.  It is all part of my new ordinary.  And according to my nurses the sooner I get use to it, the better off I will be.

So on Monday I did my best to suck it all in.  I walked into the dialysis clinic with confidence.  I eye balled my nurses asking them all how they are and proclaimed in a loud voice that I was well.  Actually I was very well in deed and not nervous at all, I yelled across the room.   Now that was a complete and utter lie.  And I am fairly sure that a few of the nurses saw straight through me but decided to play along as they took pity on me and my feeble attempt at pretending that I was suddenly fine with all that they were about to throw at me.

Within ten minutes I was back in my usual horizontal position with a blood pressure cuff on one arm and needles sticking out of the other one.  So far I was doing well and keeping strong.  It wasn’t  until they were pressing down on my recently cut open veins with a cold and hard ultrasound machine that I broke.  The pain shooting up my left arm was too much to take.  My eyes quickly filled and before I knew it I felt the warm salty drops of my tears rolling down my cheeks.   The pretending game was over.  I had failed my goal of going through an entire hospital visit without any tears or crying.

But it was at that moment that it all started to make sense.  The hard love approach all of a sudden clicked for me when the nurse grabbed my hand, leaned in close and said to me in the softest whisper,

“Fee, well done.  You are brave, we all know you are.  Keep going.”

Oh, now I get it.  As long as I try.  As long as I give it all a go.  As long as I show that  I am there wanting to live and that their efforts and hard work looking after me are worth it, I get their support.  I get their care.  And I like it this way.  It all now makes sense.

Hard love, I get you.

A conversation from deep in the depths of Fiona Stanley Hospital – January 18th 2016:

Doctor:  “Fiona your tests show that your kidney function is at 9%”

Fiona:  “Woohoo that is brilliant.  That’s a relief.  I’m so happy… excellent… thank you”

Doctor:  “Um Fiona this is the worst news I could give you.  Anything under 15% kidney function and you’re in stage five kidney disease.  You do understand that there is no stage six?  You are at 9%.  It can’t get any worse.  You need a transplant.  Fiona, we’ve been through this several times before.  You know this, you know your diagnosis.”

Fiona:  “Oh I understand.  But what is the magic number that will force me back into dialysis?  What percentage of kidney function do I need to get down to before you force me back onto those dreadful machines?”

Doctor:  “To be honest normally anything under 10%.  But with your case it will be 7%.  Once you hit 7% kidney function, and you will, then its straight back  on to the dialysis machines.”

Fiona:  “Excellent.  Then in my view I have 2% of living to do!  I’m going to take that 2% and run.  What should we say see you in a couple of months doc?”

Doctor:  “Ok, very clever Fiona.  But no, I’ll see you every month and you’ll take your medications and injections everyday.  Oh and blood tests every week.”

Fiona.  “Ok deal.  See you in four weeks.  Thanks.”

Doctor:  “Ok.  And Fiona please remember there are no guarantees in life.  That 2% might not even last a month.  Just remember that.”

Fiona:  “Oh believe me I learnt that a long time ago.  I have the t-shirt and a mug.  I know there’s no guarantees in life.”