How do I make lemonade?

So many clichés whirling through my head….

Does my cloud have a silver lining?
Is there writing on my wall?
What is the good that is coming out of something bad?
This hasn’t killed me, so am I stronger?

How do I make lemonade?  How do I take these lemons and make something sweet for all to taste?  How do I allow this to change who I am and others for the good?  What am I meant to do with this?

At the moment it isn’t obvious to me what to do.  It isn’t obvious how to make pink sparkling lemonade.  It isn’t obvious how I am to embrace this situation and help me to help others.

I am finding it frustrating as I want to learn from all this.  I want to see myself grow and give back more than I’m taking.  But right now I don’t know how.  Is this lack of knowing because I am only at the beginning of my journey?  Is it because I am still falling down my rabbit hole?  Is it too soon for me see past the horror of needles and my first surgery that awaits me?  Is it because I don’t understand my new ordinary and the true meaning of life of dialysis? For me.

Patience is a virtue.  Cliché.

I have three weeks until my next appointment.  An appointment that will define my months ahead of surgery and dialysis.  I have three weeks to be me, without needles and surgeries.

Three weeks to think about and design my lemonade stand.

STRENGTH

Giving keys.  Giving keys is a concept created by a woman in America.  She takes old hotel keys  and she inscribes a word on it.  People then give these keys to others who need more of that word in life.  It is such a wonderful gift to receive and once you have a key you can pay it forward and give it to someone else at any time.

I received a giving key.  It is a precious gift.  A gift that made me smile and cry.  I feel honored that I was given this key.  I feel cared about and warmed.

My key is inscribed with strength.

Strength.  Strength is a word associated with super heroes and athletes.  A word that people fight for.  Die for.  Love for.  A word that challenges.  A word that can bring you to your knees.

It is also a word that can uplift.  A word that can change lives.  A word that can make the impossible possible.

Today as I hold my key I realise that strength is more than a word.  It is a part of me.  Who I am.  Strength is what gets me through my hard days.  The days of wanting nothing more than to crawl into the fetal position and hide away from the world.  Not to speak.  Not to think.  Not to be me.

Thank you key, you are what I need.  Without you I would be broken, fallen down.  Today I have strength.  Today I am me.

“I’m sorry, it wasn’t what we wanted, your only option is dialysis and transplant.  Any questions?”

“Umm yes.  Is this genetic?”

“No”

“Can I still drink…alcohol?”

“Yes

“Can I go home now…please?”

“Yes”

I have been taking the less is more approach to my kidney failure diagnosis.  I understand what it is.  I understand what it means to my body.  I understand the treatment, from a medical perspective.  And I know some basic stats and numbers.

Is this enough?

Is it time for me to put on my big girl pants and ask the questions I don’t want to know the answers to?  Is it time to read the stories of the bad and the ugly? Is it time to read stories of battles and pain?

I’m scared of reading stories of blown out arteries, infections and weeping wounds.  I’m scared of horror stories taking over my already distracted mind and sending me further into my rabbit hole of anxiety and fear.  Fear of my new ordinary.  Fear of my new life.

I’m scared of not reading the horror stories and limping blindly into my new ordinary.  Unprepared for my new world that awaits me.  My new world of anesthetic creams, needle digging and magic machines.  My new world that is being forced upon me.

Will it help to read other people’s stories?  Will it help to read about their lessons and their advice?  Or despite it being a road well travelled is this my journey, my different and unique journey?

Maybe it’s a balance….maybe this is just another book to read, a topic to learn, an experience of change….

Horror is not my genre.

To read or not to read….

2,544  people started kidney dialysis in 2013

21,470 people  were receiving kidney dialysis by the end of 2013 (up by 4% on 2012)

904 people received a kidney transplant in 2014

1,142 people were waiting for a kidney transplant in April 2015

73% of people on the waiting list were less than 60 years old

79% of people on the waiting list were waiting for their first kidney transplant

3.5 years is the average wait time for a kidney transplant, however up to 7 years is not uncommon

98% of people are alive 1 year after their transplant

89% of people are alive 5 years after their transplant

56 people die everyday with kidney related diseas

These numbers are people just like me…I’m a number…

Hello again…

Hello cramping
Hello swollen legs
Hello nausea
Hello itch I can’t scratch
Hello back pain
Hello blurred vision
Hello dry mouth
Hello lifeless limbs
Hello restless legs

Hello my companions of day and night.  My intruders, you are back.  But this time it is different.  This time I know who you are.  This time I know why you are here.

Hello my toxins.  I can feel you, I can hear you.  You are oozing through every part of my already weakened and battle worn body.  You are oozing and suffocating my last goodness.  There is no stopping you, no slowing you down.  You are leaving me with nothing.

Hello my battle.  We need to fight.  We need to gather strength and put on our armour.  For three more weeks we need to be strong.  We need to be strong before the needles start again.  Before the scalpel finds its way through my skin and into my arteries.  Together we need to put one foot in front of the other and stand strong in front of our intruders, day and night.

Hello again…I know you….

Happy Friday…

“Hi Fee, how are you?”

I want to tell you that I’m scared.

I’m scared of the pen sized needles that will be inserted into my super artery three times a week.  I’m scared of my arms not healing and weeping sores the size of button holes.  I’m scared of pain.  I’m scared of sitting amongst sickness.  I’m scared the stench of sickness will seep deep into my pores and hide away from the scent of flowers or scrubbing of soap.

I’m scared of the streets I walk.  I’m scared of what lurks in the dark corners.  I’m scared of the possibility of evil up every lane way and the cost of a chase.  I’m scared that the comfort in familiarity and the safety in daylight no longer exists.  I’m scared that my trust has been replaced with a can promising a spray of one thousand peppers.

I want to tell you I’m scared of what’s inside me and what’s around me.  I want to tell you that I’m scared of who I’ll become.

“I’m good thanks.   How are you?”

BIG TENT ATTRACTION:   Hemodialysis

Come one, come all.  There is a new act at the Yellow Circus.  Hemodialysis will be arriving soon…..

Decision made.  I will put on a new costume and perform my new circus act.  Hemodialysis will be my new death defying circus act.  This act is me choosing life.

To keep living I will expand my artery.  I will have two arteries in my left arm joined to make a bigger artery.  A super artery.  We will use this super artery to pump blood in and out of my body through a needle and a machine.  This machine is my bull hook, my juggling balls, my batons of fire.  This is my magic machine and I will be hooked up to my magic machine three times a week for four to six hours each time.

I call my magic machine Kevin.

Kevin, I will to come to the big tent and we will perform our death defying circus act three times a week.  But once we have finished our performance I will leave you.  I will leave you, I will leave the big tent and I will go home.  I will go home to my sanctuary.  My sanctuary without machines, without needles, without bags of magic solution.  I will go home and leave the big tent of sickness behind me.

For four days of the week I won’t see you Kevin.  I won’t enter the big tent and perform my death defying act.  On these four days I will live life as Fee.  Fee without sickness.  Fee without a death defying circus act.  Fee without a magic machine called Kevin keeping her alive.  I will live these four days free.  I will live just as Fee.

Kevin I will allow you to exist in one part of my world – as I have no choice.  Dialysis or death.  But Kevin you will not take over my world.  You will not dictate how I live my life.  You and your magic will make me feel better.  You will not make me feel sick.  I will not wear that label.

There is a new death defying act arriving soon at the circus.  Come one, come all.

Yesterday I was assaulted and mugged in broad daylight as I walked through the busy streets of Perth. I was chased down, punched in the back and had my handbag ripped from my shoulder by a stranger. The stranger assaulted me in the afternoon sun for twenty dollars and some change.  

I think I am still in shock that this has happened to me on top of what I’ve already been dealing with.  I feel beaten and defeated.  But I know I can’t let this be the thing that breaks me.  Somehow I need to find strength to keep moving forward. I need to believe that there isn’t any rule or reason why bad things happen to people, it’s just the world we live in.

The stranger who violently hurt me, physically and mentally, for less than thirty dollars is still out there. Be careful. Everyone be aware.

There is no safety in daylight.

I tried to run.  I tried to run away.  I couldn’t run.  My legs felt heavy, in quick sand.  I couldn’t move.  Too late to move, you were on me.

I saw your bulging red eyes.  I saw your plate mouth and drooling corners.  I saw your fist pulled back.  I saw evil disguised as a man.

Yesterday you attacked me.  You attacked me like an animal.  You pounded my already battered body.  You created fresh bruises.  You created more pain.

Today you torment me.  Today you haunt my every waking and sleeping hour.  You are all I think about, you are all I see.  The rage in your noise.  The evil in your eyes.  You are etched into my mind.  You are a scar.

There is no safety in daylight.