Today’s mantra:

It’s ok to be scared. Being scared means you’re about to do something really really brave.

I want to be strong.  I want to feel as though I can conquer it all.  I am woman hear me roar!  But right now I feel I am pathetic and weak, hear me whimper.

I’m struggling right now. I have no energy and I’m feeling pretty low.  That’s hard for me to admit.  I’ve been trying my best to keep the mask on.  To keep the painted smile bright.  But my lips are smudging and my mask is starting to slip south with my tears.  My head is heavy.  My mind is foggy and everything seems to hurt.

My drive to combat and keep battling through this is starting to fall behind.  I feel limp and vulnerable.  A friend of mine commented that my life is like a roller coaster.  And she is right.  I’m up and down day to day.  I never know what is ahead of me from one day to the next.  I’m good at adapting and living in uncertainty its just the pain and tiredness that is wearing me down.  Wearing me down, down, down.

Today I struggled.

One foot.  Two feet.  They’re heavy.

Everything hurts.  Why?

Breathe.  Smile.  Action.

Sit. Stand. Think. Talk.

I’m tired.  Smile.  Thank you.

Breathe.  Chest is heavy.  I’m tired.

Home.  Pillow.  Drained.

Today I struggled.

Your mind must arrive at the destination before your life does.

I have a hectic mind.  My mind never stops.  I could be sitting on the train, walking down the street or in a meeting at work and conversations will continually cycle through my mind.  The worst is usually at night when I’m trying to sleep.  I’ll play my day back in snippets or play my next day in hope.  Even when I don’t have anything concerning me or a big event in my life my thoughts will continue in a random manner.  I’ll wonder how many people in the room with me have webbed toes.  Or how I’d look with purple hair.  Could a moth eat a whole dress?

But lately my mind has been consumed with organs.  How many kidneys are there in the world?  Are we ever going to able to grow a kidney that’s not in a pig?  What will it feel like to have a strangers kidney inside me?  Will I die before I get one?

And this has led me to researching the topic of donating organs.   I have found my research quite interesting and it has made my already strong opinion on this topic grow even stronger.

I believe that everyone should donate their organs.  I have always been of this view.  Be a hero in death.  When you die, you don’t need your organs anymore.  Don’t be selfish and hang on to things that you don’t need, be a hero and save lives.  I always believed that it would be such a wonderful dying thought to know that even though you are going to be dead as a person that somewhere a part of you lives on in another human being.  That you gave them the greatest gift possible – life.  I have always been a strong advocate for organ transplants and now that I am one of many waiting in a queue to be saved by a transplant of course I am even more for it!

My research hasn’t changed my opinion on donating organs but it has highlighted the inaccuracy of my thoughts on how to increase our donor rate.

I knew in Australia our organ donor rate was very low, and it is continuing to drop.  We are ranked 20 in the world.  Countries such as Spain and France have as much as double our rate of organ donors.  This low rate in Australia equates to nearly 3 people per day missing out on organ transplants.  For me in the world of kidneys there is about 11,000 of us on dialysis in Australia right now.  We are all waiting for kidneys.  Only 9% of us will be lucky enough to get a kidney.  That means 91% of us will need a machine to keep us alive for the rest of our lives or we will die waiting.  I could be in that 91%.

Prior to my recent burst of knowledge I thought I had the answers to solve this growing problem.  I thought that there are two simple things we need to do to increase our donor rate.  One make it an opt out system. This means that everyone is automatically an organ donor unless we officially opt out through a formal process.  And two we need more campaigns, more education – awareness, awareness, awareness.

Well I was wrong.  These are not the answers to spring boarding our low donor rate.  In fact the Australian government poured $250 million into a campaign in 2014 to promote awareness of the importance of donating organs.  It was a mass media campaign and despite the messages reaching every Australian household our donor rate actually decreased that year.  And the opt out system apparently is also not the answer as families will always be able to veto the donation once the person is dead.  Families have the last say and currently 38% of families override the wish of the deceased to be an organ donor.  This is usually due to the emotion of the moment.

So my question upon reading all this was well what can we do?  With the increase of type 2 diabetes to a level that is being tagged an ‘epidemic’ just the number of kidneys needed in Australia alone will increase dramatically in the coming years.  We need to do something.

Apparently there are two things we can do.

Firstly we can all have conversations with our families saying how important it is to us to donate our organs.  We can explain how we understand that it might be stressful and emotional at the time of our deaths, but we are making it clear that under no circumstances are they to override our dying wish.

Secondly we need to improve our system.  We need to give our medical teams the training and support in identifying early potential organ donors and the skills to work with the families in discussing the organ donor process and getting their buy in before it’s too late.

Apparently these are the two things that will save lives.  There probably isn’t many of us that can influence the way we run our medical practices across Australia but we can definitely all be organ donors and have clear conversations with our families.

It’s been a surprising journey into the statistics and issues of organ donation that we are facing as a country.   It is one that has invigorated me and I think I may have found my path into how I can try and make a difference and do something good out of this situation.

So stay tuned, who knows where I’m heading with this new found knowledge and drive….

Things I can control:

1. My beliefs
2. My attitude
3. My thoughts (sometimes☺)
4. My perspective
5. My honesty
6. The books I read
7. How often I exercise
8. The type of food I eat
9. How many risks I take
10. How I interpret situations
11. How kind I am to others
12. How kind I am to myself
13. How often I say “I love you”
14. How often I say “thank you”
15. How often I express my feelings
16. Whether or not I ask for help
17. How often I practice gratitude
18. How much I smile
19. The amount of effort I put forth
20. How much I spend/invest money
21. How much time I spend worrying
22. How often I think about my past
23. Whether or not I judge other people
24. Whether or not I try again after a setback
25. How much I appreciate the things I have

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.