I’m in hospital.  I’m back at work.

I have surgery, back in hospital.  I return to work.

I have another surgery.  Home for a while.  Back to work I go.

I try dialysis.  I stop dialysis.  Still working.

Hospital visits, back and forth.  Different specialists.  Different opinions.

I listen.  I do.

I take out the tubes.  More hospital days.

I have a break.  I breathe.

I don’t know what’s next.  I share what I know.  I don’t keep anything hidden.  And I do everything as asked.

They want to put a needle through my back.  I roll over.  They want to join my veins together.  I turn up and sleep while they take a scalpel to my arm.  They want to thread tubes through my neck and into my heart.  I ask how many stitches will I have.  They want me at the hospital at 6.40am.  I am there with half an hour to spare.

This is how I’m fighting.  I am doing everything that is asked and I’m doing it the best I can.

Why the questions?  Why the doubt?

I know the constant changes and back and forth is difficult.  Uncertainty is difficult.

Please work with me not against me.  I’m not fighting the system.

I’m dancing with it.  Dance with me.

Do you drink or eat Chinese herbs?  Do you know what they are?  Well if you do tinker around in the garden of Chinese herbs and you don’t know what you’re actually ingesting STOP  immediately.

I don’t do Chinese herbs.  I never have.  I don’t even like green tea.  Yet every specialist, nurse and doctor I see asks me what Chinese herbs I’ve been taking.  Apparently the scarring on my kidneys could be the result of large amounts of unrecognisable herbs.

Now I’m not sure what a ‘large’ amount means for it to affect your kidneys or what type.  Like I said I’ve never dabbled in the world of natural remedies.  I am sure there are many very good herbs out there.  All I know is that my kidney medical friends are very concerned about what I’ve put into my body and I would like to share that concern.

So if you are prone to putting strange things in your mouth that you don’t know much about , I recommend you think twice and consider your poor kidneys.  Do your homework.  Be safe and keep your kidneys alive.  Because believe me it’s not much fun when you have to say goodbye.

I stayed home today.  I didn’t get up.  I didn’t put on my work clothes.  I didn’t go to work.

I struggled over the weekend.  I literally didn’t get out of bed for two days.  It was a tough couple of days.  I felt ill.  Really ill.

There was a point when I was lying on my bathroom floor,enjoying the coolness of the tile on my clammy body, that I thought I couldn’t go on.  I thought I can’t do this.  I don’t want to do this.  I’m tired of being tired.  I’m tired of the nausea.  I’m tired of the cramps, the back ache and the disgusting metal taste in my mouth no super strength mouth freshener or mint can remove.  I’m just tired.  All I wanted was for some magic genie to come along, pick me up off the floor, carry me back to bed and cure me with a twinkle of their nose.  Instead I crawled back to bed and I have been there ever since.

But tonight I am feeling much brighter.  I can tell my body is feeling better as well.  My eyes have gone from completely yellow, puffed up slits to white with eyelids.  It is always my eyes that show me how I’m doing.  So I think I’ve gotten through another rough patch and back to work tomorrow.

I know I’m going to have bathroom floor type of days every now and then, when my body just wigs out on me.  But I must say I feel as though I’m bouncing back much better from them these days.  So it’s a positive step forward.

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….