Friday, December 30, 2016

The unwelcome guest

'Because sometimes that's what has to be done. 
You have to lay down with it. The hurt. Or the heartache or even the hate.
 Whatever is inside. Sometimes you have to get close to it. 
Taste it and understand it so you can define it, before it defines you.' 

I sense you, 
I feel you,
I know that you are constantly there. 
I am the antelope, you are the lion...hunting..stalking...preying.
Some days you are in the shadows waiting for your opportunity to strike.
Some days you seep into my joints and bones causing agonizing pain.
Some days you zap all my precious energy leaving me struggling to function.
Some days you leave me shaky, feverish and nauseous. 
Some days you decide to cause havoc with my heart rate.
Some days you engulf and swallow up my whole being. 
You are always there.
Waiting to attack, pouch and suffocate. 
Taunting me. 
My unwanted companion at 4am when I cant sleep due to severe pain.
My unwanted companion that takes away opportunities, choices, freedoms and my independence. 
My every move is calculated because of you.
Will walking too far upset you?
Will staying up an hour later offend you?
Will socialising cause you to become aggravated?
You make me question my every move filling me with anxiety.
Will I upset the balance?
Is it my fault?
Quite frankly you are powerful, controlling and terrifying all at the same time. 

For some reason though our paths have been aligned and as unwelcome as you are 
I know you are there.
I acknowledge you and respect your power because the reality is in a mixed up kind of way you think you are protecting me. 
You think you are helping me.
Do you know what though..truth be told I think you are confused.
Confused what your role is, what your job is. 
My body is not the enemy, I am not the enemy.
I am not your prey!
I promise you I can protect myself.
I do not need your constant suffocating grip.

I can do this without you. 
I can be whole without you.
I can be enough without you.
I can be ME without you.

I can survive without you if you just gave me the chance!

Friday, December 16, 2016

Hippy, Hoppy Christmas!

On the first day of Christmas my left hip gave to me:
one visit to the surgeon.

On the second day of Christmas my left hip gave to me: 
two diamante crutches, one visit to the surgeon.

On the third day of Christmas my left hip gave to me: 
three minute wheat bags, two diamante crutches, one visit to the surgeon. 

On the fourth day of Christmas my left hip gave to me: 
four hourly pain medication, three minute wheat bags, 
two diamante crutches, one visit to the surgeon. 

On the fifth day of Christmas my left hip gave to me: 
fifty moans and groans, four hourly pain medication, three minute wheat bags, 
two diamante crutches, one visit to the surgeon. 

On the sixth day of Christmas my left hip gave to me: 
six staring people, fifty moans and groans, four hourly pain medication, 
three minute wheat bags, two diamante crutches, one visit to the surgeon. 

On the seventh day of Christmas my left hip gave to me: 
seven sleepless nights, six staring people, fifty moans and groans,
 four hourly pain medication, three minute wheat bags,
 two diamante crutches, one visit to the surgeon. 

On the eighth day of Christmas my left hip gave to me: 
eight suggested 'remedies', seven sleepless nights, six staring people, 
fifty moans and groans, four hourly pain medication, three minute wheat bags,
 two diamante crutches, one visit to the surgeon.

On the ninth day of Christmas my left hip gave to me: 
nine Netflix movies,eight suggested 'remedies', seven sleepless nights,
 six staring people, fifty moans and groans, four hourly pain medication, 
three minute wheat bags, two diamante crutches, one visit to the surgeon. 

On the tenth day of Christmas my left hip gave to me:
 ten multiplied by ten silent tears, nine Netflix movies eight suggested 'remedies',
 seven sleepless nights, six staring people, fifty moans and groans, 
four hourly pain medication, three minute wheat bags, 
two diamante crutches, one visit to the surgeon.

On the eleventh of Christmas my left hip gave to me:
 eleven minutes to put my socks on, ten multiplied by ten silent tears, 
nine Netflix movies, eight suggested 'remedies', seven sleepless nights, 
six staring people, fifty moans and groans, four hourly pain medication, 
three minute wheat bags, two diamante crutches, one visit to the surgeon. 

On the twelfth day of Christmas my left hip gave to me:
 twelve deep breaths, eleven minutes to put my socks on, 
ten multiplied by ten silent tears, nine Netflix movies,
 eight suggested 'remedies', seven sleepless nights, 
six staring people, fifty moans and groans,
 four hourly pain medication, three minute wheat bags,
two diamante crutches, one visit to the surgeon!!!



Monday, November 14, 2016


'I know this transition is painful,
but you're not falling apart; 
you're just falling into something different,
with a new capacity to be beautiful.'
William C Hannan

Do you remember the game Jenga you played as a child? The one with the wooden blocks that get stacked upon each other and the goal is to pull out a block without collapsing the entire tower. The tower starts out strong, solid and centered but as the game progresses the tower becomes unsteady, unstable and ultimately unable to stand on its own.

 I feel like my life currently resembles this game.

I have felt my tower collapse multiple times.   I have sat on the floor helplessly wondering how I am going to pick up the pieces yet again. I have been that little five year old who cries that its not fair that their tower collapsed. That I wasn't ready and that I want another turn! I have held my breath as a piece of me is removed and my whole equilibrium shakes.

Will I hold it together or will I break and crumble?

Pain has been stacked upon pain, fatigue built upon fatigue. Sleepless nights, painkillers, limitations, frustrations make for a very unsteady tower. I open my eyes and wonder will my tower hold today, can I handle another pain filled day? Please just hold a little longer.

My tower collapsed over the last months, I have stared at my broken blocks on the floor and know that now is the time that I must rebuild. I must move forward. I can do this, I have done this many times before.

One block at a time, one breath at a time, one step at a time.

Rebuilding is scary...and confusing. How do I make the pieces fit back together? Should they fit back together? Do I need a new plan to ensure my tower has steady ground?

This rebuilding stage took a turn I wasn't quite prepared for. It was a tower that I had dreamed of but wasn't quite sure on how to build. I was offered a job...! Twelve hours a week; Monday, Wednesday and Friday from 9am-1pm. A job as a care and protection social worker at a wonderful agency where I completed my third year placement. I was to start the next week! Just like that everything changed.


I began placing my blocks on a steady foundation of rest, early nights, self care, medication and ensuring I was surrounded by my solid support system. We all knew this would be a challenge and it still is every single day but I knew I needed to try. Prayers, good thoughts and positive vibes were sent out that I would be able to cope.

It has felt amazing having a purpose away from my illness again. To be able to use all my years of hard study and apply them to practice. On the flip side it has been challenging. I have struggled with the fact that my mind goes 100 miles an hour and is so able but my poor body functions probably well under 50% currently. I get frustrated with myself (which I know is not helpful) when I cannot do what I need to. I will admit that currently every last bit of my strength is going into work and then I am left with not much else. My days off are spent sleeping and recovering...or attempting to.

I am telling myself I am rebuilding. We all must start somewhere and I am confident my body will adjust to this new routine. There is such a fine line between gently pushing my body and completely overdoing it. I need to be aware of this and focus on what I CAN do as opposed to what I cannot.

I saw my rheumatologist here last week and we have decided that it was time to start Methotrexate injections with the aim of me being able to lower my Prednisone (next blog post will talk about this more).

On Thursday I had a dull throbbing headache which I put down to over doing it. I awoke on Friday with it still there but went into work as I had a meeting. I get into work and was checking my emails when all of a sudden my eyes went all blurry and fuzzy. Then my head started pounding like nothing I had experienced before. I'll spare you the details but a stomach upset was then added into the mix. Cue Migraine time!! I found a quiet retreat in the play room on the couch where I curled up to close my eyes and hope that I still might be okay. No such luck. I was driven home where I spent the remainder of the day in my dark room with a flannel on my forehead. Surely sleep would make it go the evening I was still feeling unwell but the pain had eased a bit. I woke up the next morning feeling a little better. I thought it was over....only for it to kick in again with full force. Light and sounds were excruciating and my brain felt like it was throbbing in time with my heart beat. Another alarm bell went of when I was unable to hold down my medications.

Dan called Mum who immediately came down and took me to the emergency doctors. Leaving my dark room was extremely distressing as every move my brain felt like it might explode. I turned up at the doctors in a far from glamorous state. Mum wrapped around my arm, cold flannel to my face and a bowl under my other arm. Thankfully I was taken to a dark quiet room after mum asked the receptionist to turn down the radio.Waiting rooms are not migraine friendly.

I quivered on the bed willing the doctor to hurry up to give me something to help with the pain. After about an hours wait I was seen by the nurse and then the doctor. I muttered a few words and thankfully mum did the rest. I was prescribed an injection which went into my hip (I have no idea what it was!). Mum was told she had half an hour to get me home and then I would probably sleep for four hours. I remember coming home then I was out cold. Sleep was a heavenly escape. Once I woke up I managed some dinner then was back in bed by 8.30pm and slept soundly until 9.30am.

Yesterday I was left feeling very washed out. I felt weak and achy and just generally not myself. I still needed heavy painkillers and because I wasn't able to keep my medication down the day before my body was very sore. There was lots of sleeping and resting and trying to get comfortable. I was still light and sound sensitive. Just to add to the mix I had to inject myself with Methotrexate which I think was the easiest thing I had done all weekend then it was another early night...

Today I reluctantly stayed home from work to begin to rebuild my tower with rest, sleep, warm showers, warm cups of tea and time to allow my body to heal. If I had pushed to go to work today I would have added pain, fatigue and frustration to my already unsteady tower. My head is feeling a lot better and the light sensitivity is now gone. I am just left feeling physically and mentally drained.

What it all essentially comes down to is balance. Will this move make me stronger or will it throw me off balance.

The game continues......but for now it is time to rest this weary head.

I will continues to rebuild one block at a time.

Thursday, November 3, 2016

New hope

'There will be an answer...let it be,
Let it be, let it be, let it be, let it be
Whisper words of wisdom, let it be'
- The Beatles

I often like to compare living with a chronic illness to being on a constant roller coaster ride.
You go up and down, round and round; high highs where you feel untouchable and then of course the stomach turning lows. There is no denying the fact that the last six months have felt like my roller coster carriage has been hurtling downhill in what felt like a never ending tail spin. I wanted to pull on the emergency break. I wanted it to stop but all I could do was cling on for dear life and remember that we cannot travel downhill forever. There will be a break...there has to be. What goes down must go up...right?!

It has been a while since my last post and there are big updates ahead. I have come to understand that my blog will go quiet for two very different reasons:

1) I am physically too unwell to sit in front of a computer. The days when all my diminished energy needs to go into simple self care like making sure I eat, keep up with medication and sleeping. These are the days when I am fighting the hardest but words do not flow easily from my foggy brain. Survival mode.

2) Is when I get a window of respite from my pain and what do I do? I begin to rebuild, I begin to feel alive. These are my most treasured days and moments. Living mode.

Thankfully I can say that my blog has been quiet for reason...wait for it...2!

In order for this to make any sense I need to back track to the 20th of September. A day when a marvelous Rheumatologist was able to finally pull the emergency hand break and allow me a chance to catch my breath. I have come to understand that when you meet doctors and specialists pretty early on you can tell how the appointment is going to go. I was greeted with a warm smile, a steady handshake and instantly felt at ease. Dr M had a gentleness and calmness about him. He let me tell my story while he listened intently. I had his full undivided attention. He cared and I knew I was in safe hands. After an in-depth medical history and an examination of my joints he calmly said 'okay I have three option for you'. I let out a huge sigh of relief not realising that I had been anxiously holding my breath.

1) He explained that it was clear that Plaquenil was doing an excellent job of helping to control my symptoms but unfortunately that was now no longer safe for me to take it again. He suggesting keeping me on an anti-malarial medication but one that did not have the side effects of retinal toxicity. The medication he suggested is called Quinacrine. It's lovely side effect that I have to watch out for is yellow discoloration of my skin! That's a new one to add to the list of bizarre side effects. The only downside is that Quinacrine is not subsided by Pharmac so we have to pay for it ourselves each month. It is also no longer manufactured so therefore I have to get my own tablets made up at a compounding pharmacy. V.I.P status right there!!

2) The next option was to begin a medication called Baclofen to assist with the painful spasms I have been experiencing in my foot. Baclofen is prescribed as a muscle relaxant and anti-spasm agent.

3) Finally, as over the years I have reacted or gained no results from a majority of immune suppressants, Dr M suggested retrying Methotrexate. Last time I struggled on this medication due to side effects but if my memory serves me right I was able to reduce my steroids considerably. Prednisone is the only thing that seems to keep me stable which is far from ideal. At this stage I would rather sacrifice a day or two recovering from the side effects each week if the rest of the week my pain could be lessened. I say that now so if I start complaining of side effects please direct me back here!

I walked out of that appointment with a smile on my face. Finally there was a plan. I had answers and a new direction with my treatment. It was time for things to change.

On the 30th September I celebrated my twenty sixth birthday; I like to think this gave me new hope. I could close the chapter on being twenty five; reflect back to the wonderful blessing that this beautiful year gave me; our wonderful wedding being the highest on the list. I also felt that at the same time it was a chance to let go of all that pain and acknowledge that yes it was hard but I made it...I did it and now I have a new chapter to live. In a way it felt cleansing for me. It's not to say the pain isn't still there or somehow I am miraculously healed by turning 26 (I wish!) but for some reason it feels like a new start.

My final birthday present neatly wrapped up from Mum and Dad was my new medication Quinacrine  . We had to wait for it to be made and the day of my birthday the pharmist rang Mum to say it was ready to be picked up...if that wasn't a good sign I don't know what is. It sounds silly but I think that had to be my best birthday present (not that I didn't love and appreciate my other gifts :) )

The next day I swallowed my first little yellow pill (I can now see how your skin can turn yellow on these!!). I started with one a day for a week then increased up to two tablets once a day. As the weeks ticked by things began to change. I should also mention the incredible relief Baclofen was providing as more spasming foot.

With each neon yellow pill I swallowed I felt my body almost breathe a sigh of relief. The war inside my body felt like it was starting to ease. My bones didn't ache like they used to, morphine was switched for codeine and I spent more hours in a day awake rather than asleep. 

Each time a pill enters my mouth I feel my body growing stronger;I feel my smile growing wider and I feel my disease activity lowering. Yes these little perfect pills are working!
These pills hold hope for me; they hold the chance to flourish, thrive and to ultimately live! To be comfortable in my own skin. To begin to love my body again. To have some form of control over the pain.

I am in the process of rebuilding; rebuilding my body, my soul, rebuilding my life. It is exciting and terrifying at the same time. I need to trust; trust I am on the right path and that things will fall into place. Trust that I will be okay. Trust that this can work.

There is always a plan...always an answer, sometimes it just takes a heck of a long time to revel itself!  

Mum summed it up perfectly for me the other day. She said 'Liv it seems like you have some of your spark coming back' and for the first time I didn't have to lie because I truly felt it as well. 

It is early days but I cannot tell you how much I am treasuring these beautiful moments. I haven't introduced Methotrexate yet but see my specialist next week to talk about the possibility of adding it into my treatment plan. I have a long way to go I will admit that but for now I take immense comfort in knowing I have made progress and I am not stuck like I was previously. Hitting rock bottom is absolutely terrible and I would never wish it upon anyone but I tell you the ride back up is one of the most beautiful journeys you will ever take. Life looks a whole lot different on the ride up.

So here is to my spark continuing to grow brighter and stronger each and every day!!! 

Thursday, October 6, 2016

Life without Plaquenil

"She wears it so beautifully doesn't she, her pain...
Always smiling, always positive...always happy to help...
It's like a garment perfectly tailored to fit the way she carries it...
with a touch of grace...and the quietness of that sad smile...
All so you'd never know how heavy it really was." - Runata Suzuki 

Achy, stabbing, agonising, inflamed, painful, stiff, throbbing, miserable, nauseating, punishing, suffocating, torturous, draining, exhausting, terrifying, absolutely excruciating....
Welcome to my reality of living without Plaquenil!

Okay, I realised that coming off this medication wasn't going to be easy but potentially there was the chance (wishful thinking!) that my body would cope to some extent. I lived in hope (or blissful denial) that this would be the case but knew deep down already that there was no way I could be taken off a medication I had been on for twenty so years and expect no repercussions. 

I was informed that the drug would slowly filter out of my system over a month and to simply 'wait and see what happens'. I was started on a drug called Gabapentin to see if my pain was potentially nerve pain in which case this medication would help...unfortunately I have now weaned off it as it gave me no relief and there was no way I was going to take a medication if it wasn't doing me any good. 

Truthfully I don't think I was over the flare from the wedding and my body already felt distressed so timing was not on my side with stopping Plaquenil. It takes no genius to work out what happened...storm in a teacup or should we say in my body.

For me right now it feels like every day merged into severe pain and overwhelming fatigue. It's all one hazy fog of pain while still trying to cling desperately on to hope that I things would get better. The brutal truth was I wasn't living I was simply surviving...but heck I fought back every day again and again and again I would continue to fight with all my might. 

My days often and still often do look like this: 
  • Wake up feeling like I haven't even slept (probably because I barely have). 
  • Sit on the side of my bed and swallow some medication in an attempt to relieve the aches in my body. Some days I will wake up gasping as the pain is so severe.   
  • Lie back down and wait for this medication to kick in before I can attempt to move. 
  • On a good day I can walk to the shower by myself on a bad day Dan will physically have to help me get to the bathroom. 
  • I will shower siting down and turn the heat up as hot as I can to try gain some relief.
  • Now here comes some variation depending on how I am feeling I will either get changed and then go and recover on the couch or I will be back in bed needing a sleep.
  • I will swallow more medication in an attempt to lower my pain, heart rate and disease activity (usually about ten tablets in one go). 
  • I will then force myself to eat often feeling nauseous from the pain or fatigue. 
  • If I made it to the couch I may read, watch TV or do some writing which will then require an afternoon sleep. 
  • More pills to be swallowed!
  • If Dan is working and I can muster up the energy I go up to Mum and Dads for dinner but mostly for company and to be distracted from the pain. Dad can often tell how I am just by looking in my eyes..they give it all away before my mouth opens to tell them that I am 'okay?!' which we all know is a lie but what else can you say...I'm sore, I'm tired day in and day out gets pretty overrated!!! 
  • Some days I will eat dinner then need to to straight home but if I'm lucky I can get to watch some TV with mum.
  • I'll come home take my final lot of medication and crawl into bed. 
  • Night time is known to be notoriously bad in our household for me. There have been way too many nights that Dan has come home and found me in tears because I am just so worn out and in too much discomfort to sleep. It's cruel for me but it's cruel for him too! 
  • Dan will try to bring me relief in the form of ice packs, or wheat bags, by checking I'm up to date on my medication, showing me funny YouTube videos or by simply lying in bed and holding my hand. Have I said how thankful I am for him??!!!
  • Once I am asleep I often wake up for more pain medication throughout the night. It very rare that I will sleep right through the night. 
  • And then we hit REPEAT and do it all again!!! 
Sometimes we throw in a doctor visit into the mix or there are days when I physically cannot get out of bed. Recently I drove Dan to the supermarket as he runs in and gets our groceries and I had to lie down in the back seat and say that scared me was an understatement! My one rule is though no matter how bad I am feeling I must always get myself up to shower (even if it is just to put on another set of pj's).

I want to make this clear I am not writing this for sympathy or for you to feel sorry for me because that is the last thing I want. I am writing this to simply tell my story, share my reality. I am so much more than this darn illness but right now I cannot pretend that it is not controlling my ability to live the life I had planned for myself. I have so much hope that this is just a phase and I will regain control. Through all this pain there is still laughter, there is still joy and there is still so much I am thankful me on that!

As the month went by it became clear that the Plaquenil was coming out of my system. My left knee which I had surgery on years ago to remove inflamed synovial tissue began to swell up again...something it hadn't really done since the surgery. I would often wake up with a bright red butterfly rash on my cheeks (classic lupus symptom) and my fatigue levels hit and all time low.  


In early August I was given the opportunity of some part time work for three weeks. I was to fill in at Mum's work while her wonderful receptionist and teacher aid went on holiday. I said yes because it was only for three weeks and I was sure I could muster up the strength to somehow manage this. I knew all Mums staff are incredibly caring and supportive woman and all knew about my health so there was no worries there. I also knew it would be a safe environment where I could test my ability to see how I could function in a working environment. I was excited by this challenge and to be given a purpose away from fighting my illness. 

I was determined to give it my all and not let my health ruin this opportunity, but again I learnt that sometimes no matter how determined and driven you are your health will always have the final say. I pushed and my body shoved back even harder. I would wake up struggle to get myself ready (but always managed!) then take a couple of deep breaths plaster on my brave face turn up at work; try to fool everyone that I was okay (often unsuccessfully); swallow pain medications; try to distract myself from the pain with work; finally given in and decide I needed to go home (often told to go home by the staff); come home collapse into bed (sleep for a couple of hours); force myself up to eat; collapse back into bed then start again. This routine worked for two weeks. Some days were better than others, some days I would get to work and feel better but other days there was no escaping the pain and fatigue. Through all this though I loved the work. I loved being needed and being able to help even though half the time I was frustrated because I knew mentally I could do so much more if only my body would cooperate. 

It was over the weekend of my last week that my health took yet another bad turn. I just did not feel right or even more not alright I should say. The Friday night my body raged a war with its self...morphine was my only defense. I was back on crutches in the morning much to my disappointment. I remember driving to Mum and Dads then needing to straight away go and have a sleep. My knee was achying which was nothing new but I had developed this burning and searing pain in my left foot. I couldn't wear my sock because even that caused unbearable pain and moving my toes became very difficult. As the night wore on another new symptom foot started turning inwards spasming and twitching uncontrollably. Of course these symptoms didn't let off...which I hoped they would!

Two trips to an Osteopath who strapped my foot and massaged it but then decided that I really did need to go see my GP. I gave in and went and saw my GP on the Friday who took one look at my foot which was now fixed at a very unhealthy angle and said the words I always dread..."I know you won't like this but I think you need to be seen in ED". Something that I had stubbornly been trying to avoid all week. Thankfully she got on the phone and organised for me to be seen by an orthopedic doctor which saved us a lot of time. The verdict was I was placed in a moon boot to keep my foot straight and was given Diazepam to stop the spasming which worked a treat. The downside and the words the I can now hear before the doctor even has to say it "we do not know why this is happening". 

The moon boot and Diazepam were a heavenly relief and thankfully I was able to gain a lot of relief. The symptoms were still there if I didn't take my medication and the root cause was unknown but I was happy just to finally be able to sleep better and semi-function again. So lets just say to my extreme disappointment there was very little work done in my last week. Through all of this I was more worried about letting people down than my own health. It felt like another slap in the face as Lupus showed me its power. To me all I wanted and want to be able to do is work, but for now I learnt that currently my health is too unstable. I'm telling myself that this is temporary and believe that my dream job is still out there waiting. For now though my full time job is taking care of myself the best I can!!

So how did I get through all of this...well I'll let you in on something that I was holding out hope for and that was keeping me going...I had an appointment to see a private rheumatologist in Auckland on the 20th September. We decided as a family that I needed a fresh set of eyes to look at my case. Knowing I had this appointment kept me fighting and believing that things could and would change with my health. There was a lot riding on this appointment! 
I will share this appointment and our news in my next blog post because this one is already ridiculously long (if you are still reading congratulations haha!!) but stay tuned to find out what my new treatment plan is...yes ill say that again I now have a PLAN!! 

Sunday, September 25, 2016

The catalyst of my downfall

When you can't control what is happening, 
challenge yourself to control the way you respond to what is happening. 
That's where your power is! 

I vividly remember sitting in my ophthalmologist (eye doctor) office as he sat examining my latest eye scans. I had sat in this same room for the last twenty so years every six months. To say these appointments had become mundane was an understatement. The words that came out of his mouth next took me by surprise..."I see some changes to your eyes since your last scan, it is probably nothing to be worried about but I need to send you to Auckland to get some more thorougher tests, just to be on the safe side". My stomach sank, this usually was not the way my appointment went...a little taken back but in true Liv style I calmly asked a few questions was reassured not to worry and would be hearing from Greenlane Hospital with an appointment soon.

I think I need to back track to why I was even at this appointment in the first place. One of my Lupus medications called Plaquenil has a rare lets just restate that RARE  side effect of causing retinal (eye) toxicity. Plaquenil is known as a disease modifying anti-rheumatic drug (DMARDs) . Fun fact: its original purpose was/is used for treating malaria therefore is known as an anti-malarial medication. It is not clear why this medication works to help simmer down the disease activity of Lupus but is usually a standard treatment option for people who are diagnosed with the disease. Plaquenil has been referred to as a “lupus life insurance.” so in other words not a drug you particularly want to run into difficulty with. I had been on Plaquenil since I was first diagnosed so around about twenty two years. The longer you are on it the chances of your eyes becoming toxic does increase.

A month or so passed then on the 25th February Mum and I made the trip up to Auckland to get these specialised tests. Now I must confess anything to do with my eyes are my weakness. Put an IV line in me, inject me, heck I barely even flinched with I had a steroid injection into my hip socket but anything to do with my eyes for some funny reason makes me very anxious. When I was about five my eye doctor wrote in his notes that I had called the clinic the 'murder house'. I would cry when I had to have eye drops to dilute my eyes so we've always had this mutual understanding that he would do the testing without them. So stupid me gets on google and starts looking at the tests I have to have done and of course what does that do....further adds to my anxiety. Why do we do this to ourselves!?

Mum and I arrived at the appointment and I was sent to wait in a waiting room where I was the youngest by probably about 50 years...heck even Mum looked too young to be there! Then before I knew it the testing began. I started with the basic Field Test, an eye chart examine then I was taken up stairs for the one I was dreading an ERG and mfERG which looks at the functioning of the retina and macular. Thankfully I had the nicest doctor take my tests. To start with she put aesthetic drops in my eyes followed by more drops to dilute my pupils. Oh gosh even writing this my eyes are watering haha!! Then she placed these electrodes to the top of my forehead, sides of eyes and in the lower lids of my eyes. The anesthetic drops meant I could not feel this thankfully! Next I had to sit with my head resting into this TV like machine and watch an array of flicking lights and patterns for about 5 minutes. This was done twice as they were examining different parts of my eyes. Honest opinion it wasn't as bad as I built it up in my head.

I asked the question how common is it that you see Plaquenil toxicity...her reply "in my years of practice I've only seen a couple of cases". I felt a further relief of anxiety leave my body, I was going to be just fine. I was then taken down stairs for some final eye scans and was then free to go. Note....diluted eyes make for a very unpleasant experience! If you have this test remember your sunglasses!!

Smile or grimace?? 

I returned home and was focused on the wedding putting this test into the back of my mind. There was nothing I could do now but wait. But I was going to be fine...right?!

After the wedding and our honeymoon I had an appointment to go see my Ophthalmologist. I psyched myself up all ready to be prepared for whatever the outcome was going to be. I sit down ask about my results and he looks puzzled saying he had no results for me!! Nothing had come through...just great! In my head though I put this down to being good news. Surely if there was a problem I would have heard by now. I was told he would get his receptionist to see if there were any results and get back to me.

Weeks passed and I went to see my old GP who was back filling in and wanted to see how I was doing. We sat down started talking then she stated "So I guess you heard about your eyes?" My face told it! A letter had just come through and she had to break the news to me that my tests in Auckland revealed what we didn't eyes had become toxic from Plaquenil. Of course I had gone into this appointment not expecting this news at all. I was not prepared and most of all what does this mean for me now?

I remember driving home trying to hold back the tears but as soon as I saw Dan I just dissolved into a sobbing mess. Here I was thinking I was protecting my body from Lupus but yet the medication that was meant to be helping me had been the thing that was damaging me. I was barely over the flare from the wedding and now we were facing another unknown situation.

Rare side effect Liv it was a rare side effect but my body said challenge accepted!!

Let's look at the positive though because otherwise it just gets all too much. Thankfully it was caught early and I was asymptomatic and remain that way today. I was lucky I stayed vigilant with getting my eyes tests because if I didn't I could have been facing irreversible vision loss. Yes the situation was not ideal but it could have been a lot worse.

The major downfall for me was however that I would need to discontinue this drug and now would not be able to take it again. There was a big unknown about how my body would react without it and let's just end this blog post by saying...heck I miss that drug!! I had often wondered if it was doing anything and yes I learnt the hard way it really was doing something.

Just a little advice for anyone reading this and taking Plaquenil....please make sure you are getting your eyes tested regularly.  I know it can become tedious and I used to moan about having to get them done but it turns out these test were my saving grace. So please do not neglect your eyes! This post is not meant to scare you off taking it because I really still do think it is a wonderful medication and would still be taking it if I could. 

Saturday, September 17, 2016

Hold on to me

Hold, hold on, hold onto me

'Cause I'm a little unsteady

A little unsteady 

Written: 19/07/16

How much physical pain can one person handle? How much is too much? When does the brain decided to open up the flood gates and let out all that pain bottled up inside? How do you stop once you start? Why won’t this stop! I am so tired, I am so tired! Please pain stop!

My undoing was a glass of wine…
Or was it last night’s sleepless night due to unrelenting rib cage pain, that caused every breath to be excruciating? 
Or was it that the only relief I could gain from unbearable bone pain was morphine?
Or was it that I have been swallowed by this nasty flare for over three months?
Or was it simply that I had finally reached my limit?

I think deep down I knew these feelings were coming. How long can I survive physical pain before the emotional pain catches up to me? 

I am a bottler, I know this. From an early age I have had the mentality that this is my reality lets just deal with it. Lets look on the the bright side, be optimistic and everything will be okay. A lot of the time this does serve me well. I wouldn't survive without this positive outlook. My problem is I bottle for too long sometimes. I keep it all held inside and then become scared to let it out because my fear is maybe it wont stop. I bottle to protect myself and I bottle to protect those around me. Tonight the lid released...and the contents poured down my cheeks. 

I sit here tired….I sit here absolutely shattered. My soul is exhausted, my body is drained and my mind is numb. The only thoughts I can form over and over is ‘I am tired, I am tired I am so very tired’. It’s the kind of bone crushing fatigue that no amount of sleep will fix. The type of fatigue that even when I am lying down I feel like my body is going to collapse from under me. The type of fatigue where talking becomes a mammoth task and sometimes even breathing feels too exhausting. I wish I was just ‘tired’ but in reality it is so much more than that five letter word.

Tonight I sat in my quiet house and I finally let myself cry…I let myself sob. Cry out the physical pain, cry out the frustration, cry out the limitations and restrictions, cry out the life that I feel that I am missing out on. Just cry because I simply feel sad. I love my life don’t get me wrong I have so many blessings but right now it is just so damn hard. Pain is so cruel and overpowering.

Tonight I give myself permission to feel these emotions, to admit that I am struggling and to allow myself to cry because reality is that it is really miserable to be in a body full of pain. I need to allow myself to feel these emotions instead of blocking them out. It doesn’t mean I am not coping and it doesn’t mean that they will never stop. 

It is okay to cry Liv you are not failing anyone. Let that guard down!

Tomorrow I will pick myself up and I will keep fighting because even though my pain is unrelenting right now I know deep down in my soul I am that little bit tougher; that little bit more stubborn. There will always be a part of me that is stronger than this pain, even if at times it is only a tiny particle.  
I can allow myself to fall apart but I must pick myself back up.

For now Liv just rest, close your eyes and rest. You have been so brave and just like all those times before you will be okay!

Thursday, September 15, 2016


"You will not always be strong, but you can always be brave." Beau Taplin 

I think we all knew deep down that it was only a matter of time. Only a matter of time before the harsh reality of living with lupus caught up with me. We knew I would crash after the wedding but I can tell you we were not prepared for this next chapter. Our vows in sickness were soon put to the ultimate test... 

I cannot be thankful enough that my lupus went quiet and for once and played the game. Best wedding present ever!! Thank you Lupus!  I'm not actually sure if you purposely went quiet or I outsmarted you with a high dose of steroids but anyway I'll take the win.

I walked down the aisle and married the man of my dreams. I wore heals, I danced and I truly was pain free. But trust me Lupus you wouldn't have ruined my day even if you did want to be there. 

Again we left you behind in New Zealand as we headed to Rarotonga for our honey moon. Five blissful nights in island paradise!! It was the most beautiful and the perfect start to married life. We were on top of the world! 

Lupus, you tracked me down towards the last few days but thanks to painkillers, an understanding husband and a few too many rums I kept you at a distance. I could feel you starting to creep back in. I was not ready! In my head I begged with you to wait let me have one more pain free day to just be free to live. My ankles began to ache, my bones throbbed and I began to need to sleep during the the pit of my stomach I knew this was not a good sign. 

We knew you were coming and it was only a matter of time before you made your unwelcome appearance (yet again).  You took the sneaky opportunity of making your grand entrance once I began to taper down on my prednisone. Or was it once I stopped to finally relax back at home and settle into married life?...we will never know. 

I wasn't ready to have you back and as much as I fought it ultimately you did fight harder, you've always been good at that. You wear me down bit by bit. You take away my freedoms and the ability to make choices. I go into survival mode and you go into destruction mode and destruct me you did! You broke me! Days of uncontrollable pain took their toll on my body, mind and soul. It felt like I was being punished for all those days of being pain free. Like you were making up for lost time and now I was just your host. 

I finally broke on the 5th April (just fifteen days after returning home from our honeymoon) after a night of terrifying unrelenting pain that induced vomiting. I had nothing left! I remember ringing my poor mum in tears telling her I couldn't take it any more I simply could not do it. I needed help.  I was taken to my doctors office and by this stage dad had to push me in a wheel chair. I was one sick girl!! I no longer felt like me.  My doctor took one look at me and before I knew it I was in the Emergency Room then being admitted to hospital for pain relief and to be monitored. 

I cannot imagine how frightening it must have been for my parents and Dan. I remember mum physically having to hold me up to walk to the bathroom and being wheeled just down the hall for a chest X-ray because the pain was to unbearable and I was to weak to stand. 

Lupus you truly out did yourself I will give you that. Usually I would do everything in my power to be discharged and recover back home in my own bed but for the first time in my life when the doctor said he didn't feel comfortable sending me home I didn't try and bargain with him or plead to go home. I knew I was where I needed to be! 

Relief did come to me in the form of iv morphine though out the night. All I could do was lie there with my eyes closed and rest my weary body. I didn't fight you that night I didn't have anything left. I just let the morphine take effect and drift away. I had the most wonderful nurses who kept my pain under control through the night and would heat up heat packs to soothe my joints. 

The next morning my iv morphine was switched to tablet form and with the pain being under better control I was discharged in the afternoon. The next weeks were a haze of morphine induced sleepiness and a body still not able to function but I was thankful to at least be able to control these symptoms from the comfort of my own home. 

Oh how I look back now and wish that was all I was going to badly I want to type and they lived happily ever after without Lupus THE END....but the next chapter was just beginning and all we could do was cling to each other and keep searching for our little pockets of joy!! 

Welcome to married life chronic illness edition!!! 

Tuesday, September 13, 2016

To my husband on our wedding day

I am not sure if brides typically speak on their wedding day but as you probably know I wasn't exactly the traditional bride or one to follow the 'usual' way of doing things. For me personally it wouldn't have sat right with me if I didn't get up and say a few words (or a lot of words!!).

I wanted to include the final part of my part to Dan. It's safe to say this reduced a lot of people to tears and I spent the entire time reading off my piece of paper because i knew if I looked up there would be no returning to a composed state.

I went back and forth about whether or not to include my health battles in the speech but ultimately decided that it makes up a huge aspect of our relationship (whether we like it or not) and I felt by ignoring it I was not doing justice to the authenticity of our daily lives and the true strength of our love. It was real, honest and for me it perfectly captures the love I have for Dan. So here it is....

To my husband (oh my can't believe I can say that now). On our very first date together sitting in Starbucks nearly 8 years ago to this day you asked me to be your girlfriend I smiled down into my mocha and knew deep down in my heart I had found my soul mate. There was the way that from very early on and still to this day I feel safe and secure and comfortable with you. With you i feel like I am home. I could finally let my guard down and be myself. You loved me for me not front no act  just me. 

Today we vowed to love each other in sickness and in health but Dan I feel like you have taken this vow early and lived up to every precious word. I'm not going to lie we have faced some very tough and scary times together in relation to my health. I still vividly remember when I told you about my illness being worried that it might scare you off. But the words you said to me still bring me immense comfort today. You said 'that now we were two people fighting one illness and that I would never have to fight alone'. Dan that's when i knew you were the person for me.

 I think we like to imagine that love is this big gesture like we see in the movies but you want to know what true love is for me...its Dan rubbing my back while I wait for my pain medication to kick in, it's Dan heating up endless wheat bags to soothe my aching joints, it's him holding my hand while I nervously wait in yet another doctors room and it's him endlessly telling me that it's going to be okay even when he is scared . I'll tell you now that's a beautiful pure raw kind of love and that's the love I have with you. 

People often tell me that I'm the brave and strong one but hunny I think they have it wrong. In my eyes that is you. You selflessly give everything in your power to make me more comfortable. You are the true hero in this and I want to thank you from the bottom of my heart for choosing me to share your heart with.  You bring a whole new meaning to the word devotion. I still can't believe how lucky I got. Together we make each other better. 

Dan because of you I smile more,
because of you I have hope,
 because of you I am stronger 
And because of you I finally feel healthy. 

I love you Dan and I cannot wait to share every waking day showing you this. Here's to our happily ever after! 

Mr and Mrs (continued)

By this stage I am still pinching myself to check I am not dreaming. Already my day had been filled with so many blessings and I hadn't even walked down the aisle yet. It was real, this truly was happening and I was now so eager to walk down that aisle and see my soon to be husband.

I traveled in a car with Mum and Dad while Josy, Sam and Summer rode in another car. Dad sat in the back with me and held my hand the whole way. I remember by this stage it finally hit me that I was about to get married. Haha even writing this my heart starts beating faster thinking about this moment. I made a point to be on time and not leave poor Dan waiting at the alter for any longer than he had to.

Our ceremony was held at a place called Oak Valley Manor. A stunning garden surrounded by white roses and a precious little chapel (which was our wet weather back up). The weather played it parts and everyone prayers worked. All week we were scheduled for rain. I almost brought an umbrella and was mentally prepared it would rain. On the day before during our rehearsal there was no rain but it was incredibly windy which made it very unpleasant. Even when we woke up that morning it was still windy but just like magic it dropped away and we were left with a perfect day. The owners of the venue said that they had never had a wedding party have such a stunning still, clear day. We had lots of beautiful souls looking down on us helping in that department.

We arrived and our priest came over to greet me then we all joined hands and said a quick prayer which was a lovely gesture. It calmed us all down and gave us a minute to just breathe and center our thoughts. Then the music started and it was time...Dan later told me that although they couldn't see me they could all hear me laughing which sounds about right!!!

We had chosen to walk down the aisle to Jason Mraz 'I wont give up' we had it sung and played on an acoustic guitar by Dans family friends (Josie and Jimmy). Their voices were breath taking and the words to this song have always given me chills. For us as a couple that sound encapsulates standing by each other side through life challenges as well as the wonderful moments. It is about being each others pillar of strength and knowing that no matter what happens from this moment you will always have your number one supporter by your side. It is simply about not giving up...on our selves and on each other.

I had both my Dad and Mum walk me down the aisle. This was a decision made even before I was engaged. I always wanted both of them because I wouldn't be where I am today without them. I needed them both there to hold me and to take this special walk together. I think Mum mainly wanted to make sure I didn't fall over!!

 I distinctively remember firstly being overwhelmed with the instant amount of love I could feel walking down the aisle of all the happy smiling faces then I locked eyes on Dan and everyone else seemed to fade away. The first look at each other gives me chills. He was beaming and I knew I was beaming. After hugs from Mum and Dad I finally embraced Dan and I had never felt so perfectly placed in the world in that minute. Everything had been leading up to this minute and I tell you it felt so natural and overwhelming peaceful. I was finally where I was meant to be.

Dan and I were both brought up in the Catholic Church and attended Catholic high schools so faith was an important part of our wedding day. Our Priest who married us had had a lot to do with our families so having him marry us meant a lot.

We had our close friend Bex do a bible reading (Colossians 3:12-17). Which talks about clothing ourselves in compassion, kindness, humility, gentleness, patience and forgiveness  but "over all these put on love, open yourselves to lasting peace and be grateful".  In our eyes the formula for a deep rich blessed marriage. 

This is an insert of part of Father Craig's homily:

It's been said, and I think it's true, that good marriages, like good wine, take time to mature. You are both very young but you have already begun this journey in a way that many people will never achieve.

If there is any one word, which helps to define a good relationship it's love. The experience of being loved, no matter how old or how young you are, cannot be compared with anything else. No amount of money can buy it. Nothing can compare to the knowledge and experience of being loved just for who you are. Love is much more than a feeling but it gives us a feeling of wholeness. Love gives us a sense of our own worth and without it, we feel empty. 

Daniel and Olivia, you are being invited to hold on to what's good. You are already a light for our world. Let go of anything that will harm your marriage and never stop being grateful for one another. I encourage you to continue putting your trust in God who loves you deeply. He wants you to be truly happy and to enjoy his friendship. He will always be there for you but he wont force you.

 Lastly, our hope for you, as a family and friends and your wider church family is that you will be happy in your marriage and that your love for one another will deepen and grow richer all the days of your lives. 

It was then time for our vows and Dan and I could not stop smiling....make that beaming. I always thought I would be a blubbering mess but I just had this perfect calmness and serenity wash over me that every word I spoke to Dan came from the bottom of my heart. I looked into Dan's blue eyes and knew that for the rest of my life I was now home.

 I was told later again that once we were pronounced husband and wife I let out a big 'wooohoo' haha classy... and then Dan said he quickly joined it. I have no memory of that!
 We all knew what was next the awaited first kiss....which have to be two of my favourite photos.

We then lit our wedding candle which I had wrapped the bottom in the left over lace off my dress.  Dan's sister Tamsin, my brother Joe, my friend Jemma and cousin Tom all read out the Prayers of the Faithful. It was special to have our nearest and dearest included in this way. Then it was time to sign the register while Josie and Jimmy sung Ed Sheeran's Kiss Me....after seeing him live twice Ed had to be included in our wedding day!

 We had one more blessing and then were declared for the first time Mr and Mrs Hall!!! We walked back down the aisle to Imagine Dragons 'On Top of the World' which really doesn't need any explanation as to why we chose that song.

The next phase was filled with so many hugs and congratulations and more happy tears. I do not think I had ever been hugged so much in my life. It was then time for group and family photos then our bridal party and us slipped away to capture some beautiful photos. Our guests were left to mix and mingle in the garden with champagne and some amazing canapes (mini prawn rolls with wild rocket, lemon dill mayo; sushi with ginger and soy; rare beef fillet on brioche with smoked mushroom).

Below are some of our favourite photographs....Aimee Kelly is not only incredibly talented and passionate about her photography but was so much fun to shoot with. We really got lucky choosing her to capture our day. She was a true gem and has now given us special memories to cherish forever.

 We had our reception at a bowling club which the day before we decorated and it came up better than we could have imagined. We covered the tables in craft paper and then everyone had a paper doily place mat with their name which was written in calligraphy. We used an old suit case and luggage tags in craft paper as our table settings and on the table had wedding photographs of our parents and grandparents. Joe (my brother) had spent the last few weeks before the wedding planting succulents into vintage jars which were scattered around the table. Josy and my Aunty Pam had also done up flower arrangements in shades of green and white. Months before Mum and I spent our evenings making paper bunting and dear Bex had the patience of a saint and hand thread the doily bunting which we hung across the ceiling. We even had a cupcake table where people could ice and decorate their own cupcakes and take them away as favours or of course eat them right there.

If I had to describe our reception it was a labour of love.


 Talking about a labour of love our wedding cake was hand made by my fabulous relative Brenda. You only have to take one glance at the photo to see the detail work, time and effort that went into this cake. It was everything we had pictured plus so much more. A very special touch is the tea cup on top which was a set left to me by my late Nanna. This was my way of including her in our special day.

As Dan is a chef, food was his domain and it is safe to say the food was outstanding. We went with a buffet which meant our guests could choose what they wanted. Below is our menu...

Aged beef Sirloin with roast garlic and thyme crust.
Baked NZ Salmon Fillet with salsa Verde and hollandaise.
Lime and pepper berry chicken breast.

Balsamic roast Beetroot with marinated feta, basil and walnuts.
Sautéed green beans with roast garlic cherry toms and baked ricotta.
Gourmet potatoes with mint butter .

Wild rocket pear and parmesan salad with white balsamic dressing.
Avocado, cucumber and baby cos salad with chardonnay dressing.

Followed of course by dessert...
Baked white chocolate cheese cake
Vanilla and hazelnut Meringue with fresh berries and chocolate fudge sauce

Everything was cooked to perfection and I had one very happy husband and guests!! Mai Catering and Ryan you are highly recommended by us!!!

One of the highlights of our wedding (okay there were so many highlights but this was up there!) was our speeches. We laughed, teared up (cried!!), cringed and stepped back down memory lane as my dad, Dans mum, Josy, Jamie, myself and Dan all got up and spoke. Each speech was so different but perfectly captured the feelings and love they all had towards us.

After the speeches Dan and I slipped away for some sunset photos, cut our cake and finally had our first dance to Jack Johnson's Angel/Better Together. For the record we cannot dance haha!!
We had booked such a talented band called On Yer Bike which ironically played at our school ball where Dan and I won the 'Cutest Couple Award!'.

We danced away until 11pm till I could physically barely hold myself up and it was time to love and leave everyone and head back to our hotel.

I would have thought this day was all just a perfect dream until the next morning I woke up rolled over and was greeted to the words 'Good Morning my beautiful Wife!'