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.' 

JmStorm

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,,,, 

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!

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!!!

AND THE BEST PRESENT OF A CORTISONE INJECTION

                                       

Rebuilding

'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 away....by 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.

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 fatigue..so 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 well...no 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!!! 

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 sleep...to 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 for...trust 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 began...my 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!! 

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 all...no! 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 want....my 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. 

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!